Happy Summer Friends and Family!
Well, it's been about 6 months since my last update, so that means another MRI, just yesterday. No cliffhangers on how my scans went-I had to let the cat out of the bag in the title of this post. I'm just too excited! Sorry folks...
Anyhow, it's been a treat to have switched the frequency from every 3 months to every 6 months. So much less scanxiety!
This MRI scan had almost no areas that "lit up" or were enhanced.
Besides that, I am still working on my left sided hemiparesis / mobility issues-doing PT at home exercises a few times a week. For my OT, I've also been trying to get my left arm and hand in on the party to get my brain to re-form connections to my left hand and fingers. It's weird that once my left arm and hand stopped working, I just started ignoring it and stopped using it! So my OT gave me a recommendation to put my left hand on the table or in my peripheral view so that my brain knows it's there and doesn't forget about it. I also try to walk as often as I can, and I'm now walking free range as I described it to my oncologist, down my block and back. Initially, I was falling so often that I didn't feel safe walking alone outside. Now that I feel more proficient with my disco stick (cane) and I'm building up my strength, I have the courage to go on short walks on my own. Independence! Which reminds me... At the end of September, I'm going to be visiting my family in the Chicago suburbs, and I'm flying solo! I have always flown with my own personal air marshal/escort (Dan or one of my sisters). I'm just feeling so hopeful and happy about my health right now!
Other things I've tried or am still trying since my last journal entry:
1. Botox right into my muscle-super painful and I didn't feel it making a difference with relaxing spasms in my left knee and hand.
2. Cranial acupuncture-4 weekly acupuncture sessions maxing out at about 3 needles going into the top of my head plus others in my hands and the cartilagenous parts of my ears. I seriously thought I was going to look like the pinhead guy in the 1980s movie "Hellraiser". No, not like that at all. Not even painful! After 4 sessions, I, unfortunately, didn't notice a difference. So we stopped.
3. E-stim-electrical stimulation to "wake up" muscles that hadn't been used in awhile. Weird feeling to feel an electrical current and then see a part of your body uncontrollably move! We then tried a device that was essentially a brace with an e-stim built into it. It sent an electrical current to specific muscles in my leg on a timed cycle to assist with a smoother walking gait. We tried this device on me with the company rep, but couldn't get it to work. What a cool device!
In other news, fun things we/I did this past summer:
1. Seattle activities: We went to the Kubota Japanese Garden in the Rainier district-very well-shaded and not too crowded on the trails. We followed that with lunch at "My's Vietnamese Sandwiches and Deli" on Renton Ave S. Kinda a hole in the wall, but delish Bahn Mi sandwiches and outdoor tables.
2. Light happy read and true story: When Harry met Minnie-This is a bittersweet story about 2 women who live in New York City who both have bull terriers (think Spuds Mackenzie) as pets. You don't have to be a dog lover to appreciate this book. It's about human and canine relationships, friendship and love.
3.TV/Movies: We binged The White Lotus (HBO Max) - The White Lotus is an exclusive resort in Hawaii. The show starts with us learning that there was a murder at the resort, and Armand, the manager, training a new employee, explains that the hotel's employees should cater to every guests' needs but at the same time "just blend in and be vague". It turns out that the employees are anything but "vague"-getting involved in the guests' stories. And the guests and employees are very quirky, have the strangest conversations and the scenery and music is great! All the while, we're trying to figure out who committed this murder. Awkward situations, cringe-worthy interactions, weird characters. What else do you need? Another fun series we watched was This Way Up" (hulu)-If you liked Catastrophe, you'll love this series also with Sharon Horgan! This one's about Sharon Horgan and her sister living in Ireland and being pretty hilarious. Excellent movie (nominated for an academy award for Best Documentary) was Crip Camp: A Disability Revolution (Netflix). This is about a real NY summer camp "Camp Jened" described as a "loose free-spirited camp designed for teens with disabilities". Funny, heartwarming, inspiring. I couldn't believe how people with physical disabilities were treated as recently as the 1960's! If a child had a physical disability, he/she was made fun of publicly and was not allowed to go to public school. Campers from Camp Jened went to Washington and lobbied for the passing of the ADA. The movie was executive produced by Barack and Michelle Obama. Now that I'm thinking about this, I want to watch it again!
4. We hired a caregiver who is awesome! 2x3 hour shifts per week to help me with some meals, PT, laundry, running errands, and taking me to some appointments. She has been so incredibly helpful! I don't know why we waited so long! And she even laughs at my jokes
And finally, I watched the olympics 24x7. I hope that atleast some of the Paralymplics are televised!
Thanks for reading this far...
Hugs and kisses xoxoxo