It's Been Awhile!

Dear friends and family,

Eden here. A lot has happened over the last 6 months, and apologies that we’ve gotten far behind on these updates. My left sided weakness had worsened significantly in March-April, which was scary. Running, tap dancing, pilates, and yoga had gotten very difficult for me. When this all began in the spring, ! I had literally stopped using my left side, using my right side to compensate as much as possible.

Initially, Dan and I were just trying to keep the house up to date with my mobility and balance problems-keeping stairs safe with more bannisters by our stairs and grab bars in the shower.  I started frequent sessions with rehab therapists for physical, occupational, cognitive, attention, memory and speech (I was slurring my words, and I had gotten kind of spacey). Dan would describe me as being “ a few cocktails in”, trying to keep things light.

At this point in my rehab, I’d say that I’ve been able to adapt to my current situation. I’ve been getting stronger. Dan, my PT, and OT agree with me on this! The left-sided weakness symptoms have basically plateaued or they’re slightly improving! I use various braces on my left side and a cane, On my foot, I wear what’s called an AFO brace, which holds the front of my foot up and prevents it from dragging on the ground. Since I started wearing that, I’ve been able to get around much more safely and independently. As my left-sided mobility worsened, I was tripping all over myself. I’ve been working with my PT & OT on strengthening exercises (where I haven’t been using the left side limbs and muscles) and exercises and movement to rebuild and strengthen the motor neural pathways, so that I can get back my mobility for everyday tasks, walking without a cane, and get back to exercising! The OT, PT and regular massages have helped tremendously with maintaining my range of motion in my left shoulder and hip. It’s hard to imagine, but I’m still unable to use a keyboard with 2 hands or reliably carry something with my left hand. But I know I will get there.  My OT has also taught me some cool tricks that have helped me to adapt to life and getting around with the use of one arm and one leg. For example, as you could imagine, getting showered and dressed and preparing, serving, and eating food are super challenging with only one arm. There were so many things I’ve taken for granted as someone with the use of both arms and hands. Throughout this journey, I’ve gained some really good perspective on living with a handicap, using a cane, and not being able to move quickly. I struggle with heavy doors that don’t have an automatic door open button. Fortunately, Dan, Mike (my brother in law married to my sister, Libby), and David (Dan’s brother) have no qualms about helping me get into women’s restrooms. There are so many newly-built buildings that don’t have these ADA accommodations for heavy doors or doors that shut too quickly, it’s surprising! And it’s scary to feel like you’re going to get crushed trying to make it through these doors quickly!

As my symptoms worsened, my MRI scans started to improve in the Treatment Effect area my doctor had been watching. Because my scans didn’t correlate exactly with my symptoms, my doctor thought there was “something else going on”, possibly recurrence of the tumor. She suggested I start on a type of chemo called Temozolomide (aka Temodar) They’re pills I take at home for 5 days at the start of each cycle, followed by 23 days of rest for every 28-day cycle. Dan and I met with two other neurooncologists in Seattle, and both recommended the same. This drug has few side effects and has been very manageable for me so far. It typically takes up to 6 months to see a response and it’s often taken by patients for 6-12 months. My next MRI is in September and I'm sure we'll have some encouraging news to share! Until next post... take good care of yourselves! Sending hugs and kisses...