"The true miracle is not walking on water, walking in air. but simply walking on this earth."
-Nhat Hanh
It took me a while to find the motivation to come out and share this information but I don't want to hide my reality anymore. I don't like the attention but I'm over hiding behind my camera and not being "real"...so here it goes. I wish I was lying when I say in the beginning of the year, separate from COVID, my life was turned upside down. I underwent my 6th craniotomy on December 9, 2019 and since then, have been learning to walk. Fortunately I've been able endure previous surgeries to remove tumor growth with minimal effect on my body but this time the surgical location pushed up against the area of the brain that controls my leg and more of my arm. When I woke up I could not move my left leg (toes, feet, ankle) or arm whatsoever. My arm has been weak for sometime now but the weakness increased. As far as my leg now, it's too weak to bear weight on and if i try to walk, my left foot rolls to the outside. The only way I can walk is by using a brace on my left leg that goes from below my knee to under my foot, an ankle foot orthotic (AFO.) Note that I had mine made pink but am now wishing I thought about the practicality of the color when I had it made. In addition to my arm and leg issues, because I've had so many craniotomies my surgeon didn't want to use the same incision area because of the integrity of the skin so the plastic surgery team was brought in to help locate a new incision location.As part of this, all of my hair was shaved off and when I say all i mean ALL..like taking a bic razor to my head.(photo below) I know people say, "well it's just hair, it will come back" but try losing one more thing you had full control over. It sucks, man but back to the other more important stuff. To put it into perspective, below is a timeframe of "accomplishments" and recovery.
12/9/19- 6th craniotomy resulted in left leg/left arm/hand hemiparesis - not complete paralysis
12/11- crossed left ankle over right ankle, still in hospital
12/12-assisted shuffle on right leg from bed to chair, to commode (bedside toilet)
12/16-3 steps fully assisted with OT/PT , very minimal weight bearing on left leg. still in hospital
12/18-transferred to inpatient rehab
12/19-begin therapy. hour & a half daily each of OT, PT, 45 minutes of Speech therapy, . During first OT session I worked on personal tasks(bathing, dressing. I had a lot of trouble putting my bra and shirt on. During first PT session I walked with assistance by holding a parallel bar with right hand and not putting a lot of weight on left leg, I worked on changing directions for the first time Speech therapy-about an hour, I was evaluated if need therapy which is the standard protocol.although I wasn't recommended as a need for speech therapy, I opted for it to work on my short term memory.
12/20-walked with hemi cane 80 feet - big accomplishment! a hemi cane looks like this:
12/24- I walked on a treadmill for 2 10 minute intervals and did leg press machine on left leg, squeezed nurses fingers a little bit for the first time with my left hand.
Continue inpatient therapy until mid January. The goal of inpatient rehab is to ensure you can get home safely and then continue outpatient after that. When I was discharged home I was NOWHERE near being independent and Todd was still traveling for work so so I had someone from my family there 24/7 on a rotating schedule.
It's definitely been a long process to build the strength and balance, for months I used a forearm crutch cane but only one on my right side where my strength isI also spent my fair share of time in a wheelchair..mostly only out in public once i got home from rehab:
I haven't used a cane in over a few months now though I'm still working hard on my gait (pattern of walking) because I limp and don't have the best upright posture. The comfort of bearing all my weight on my left is not entirely there. yet. Additionally I get a lot of spasticity in my arm causing it to raise and contract when I walk ... Spasticity is the uncontrolled tightening (increased muscle tone) caused by disrupted signals from the brain. It is common in persons with severe brain injuries (TBI). While I don't technically have a TBI, some of my symptoms and deficits mimic those of a TBI diagnosis. People with spasticity may feel as if their muscles have contracted and will not relax or stretch. They may also feel muscle weakness, loss of fine motor control (for example, being unable to pick up small objects) It can increase during certain exercises.. I recently got botox which relaxes the muscles so that does help a bit, especially with stretching and my therapy exercises. I've been working hard but it's definitely been a process with some falls here and there - nothing serious and I am fully capable of getting myself up off of the floor on my own.
Nice weather came quickly, allowing us to start taking walks outside and even if I was still using my cane during that time, I would leave it at home and just walk by linking arms with Todd. We slowly worked up our distance and in no time we made it a mile! The next thing I'm working on is the ability to get in & out the doors (back and front) so that I can go outside on my own. I can get inside the front door and I'm getting close to going out the back door where there are even steps! I'm starting to get fancy! The real challenge is holding open the door to enter without the door closing on you. ***UPDATE*** Since I originally wrote this i can get in AND out of the front door and I can get out the back door just not in...yet. I've discovered that the front porch has become my happy place and so being able to get out there by myself is everything
Following discharge from rehab, I immediately enrolled in and began a clinical trial through the National Institutes of Health (NIH). this was an immunotherapy drug trial specific to my tumor type that I was on from about end of January through mid June where I had ...wait for it...another reoccurrence.Mind you this scan followed a scan that showed improvement so it wasn't really the expected outcome. Once/if you have a scan that shows disease progression then you are removed from current treatment because why would you want to put unnecessary drugs into your body? Once this was identified the next steps were discussed...there is another trial that again, is specific to my tumor type and genetic signature with a goal to slow disease progression. As I'm sure you know or at least can figure out that when there is a reoccurrence all previous plans involved surgery so that prior to beginning a new treatment, we can start with a "clean slate" for the drug to target . I know i've had a LOT of surgeries but in all reality the fact of the matter is that if it really weren’t for all of the surgeries then I might not even be alive because if you think about it, it’s been a vicious cycle...treatment that shows slight promise for just short of a year followed by reoccurrence isn't exactly the ideal situation...With that said, we did opt for surgery again which I actually just had Monday, 6/29. Because of how the last surgery impacted my left side, it was pretty much expected that I would need to return to rehab. The great news was that I woke up with the same strength and abilities that I came in with so I did not have to return to inpatient rehab. Apparently when I woke up from surgery I really couldn't move my left side at all again. I had no recollection of this and shortly after I woke up in ICU, I gave my left leg a try and could move it! what a freaking relief! Seriously it's the weirdest thing but this experience was COMPLETELY different than any other that I can think of. This includes COVID restrictions (you could only have 1 person on day of surgery, all other days you could have 1 visitor per day between 10am & 7pm, this means only 1 person and it has to be the same person all day). I'm so fortunate my surgery wasn't during peak COVID, the time where you couldn't even have a single family member there. These restrictions actually eliminated a lot of stress and while i've always loved my army of visitors during previous surgeries, these policies really allowed for ample rest and structure so that I knew exactly who was coming to visit and when, keeping it to immediate family only. In regards to the ICU experience, previously I've always woken up in ICU not wanting to talk to or see anyone, feeling super nauseas and uncomfortable. This time was completely opposite, I feel like as soon as I opened my eyes in ICU, I was good to go and was pretty much begging for popsicles - you have no idea how dry your mouth is after surgery..or maybe you do then you know what i'm talking about..I am so pleased with this past experience which is weird to say considering it's brain surgery but all I wanted and thought about up until surgery was to come home just as strong and that's exactly what happened - I was discharged Thursday morning,7/2 and have been trying to relax at home the best that I can so that I can heal up for this next treatment. While my progress as far as my left side didn't get worse, I still continue with outpatient PT/OT a few times a week.
Have you ever met anyone who meal preps for their hospital stay? Now you have. Maybe it's because I've experienced the delicious nutritious food from hospitals over the years but i've gotten to the point where I'm really not a fan of not knowing where the food comes from or how it's prepared so if I can control those things then that's what I do. I also had home cooked food as much as I could for my month in rehab. (There were mini fridges in the rooms and mine was always fully stocked to the max).
I want to share some pictures to showcase what i've been "hiding" but first I want to be real for a second. Until December, my illness has been for the most part, invisible. Now with all of the changes, I now feel that I officially look like a "sick" person that can no longer hide her illness. The whole point of sharing this is only to explain more of why I have avoided making any of this known or sharing pictures. Obviously I know I don't I have no obligation to share any personal information or even show pictures on social media, I do enjoy sharing experiences which include pictures, etc or even just silly stupid things on Instagram, if you could see my brace or tell my hair was gone then I 100% avoided sharing at all costs. I think now I will feel much more comfortable. It would make life so much easier if I didn't give 2 shits about what people think but unfortunately that's still a work in progress. Last thing - I won't lie, I have a pretty great shoe collection but this currently with this brace I only have 3 different pair that will work- a cute pair of Rocket Dog velcro shoes, Nike Flyease (specific AFO friendly shoe) and the most recent addition a pair of Tevas.
With all that said, check these out. these aren't really in any specific order and I also included some early on walking videos. These videos & pictures show me in an extremely vulnerable state but I think sharing them is a crucial part of my story and it's important that I remember how much I've accomplished since December. I decided to make a YouTube page to hopefully post cool progress videos as I remember or even get anything worth sharing. All of the videos below are already posted on it but I guess if you want to see any new ones, or other relevant videos as I add them then you can subscribe to my page.
Mackinac Island 6/24
12/12/19 (3 days post surgery)
beautiful wig from aunt Tina :)
fun wig from Amy:)
My little lover shortly after home from rehab....lots of sleepovers with my favorite girls!
Christmas Eve at rehab
Christmas Eve dinner at rehab
shrimp& cheeseball appetizer
homemade clam chowder
mashed cauliflower, grilled steak & peppers
Christmas at Rehab
Sister love rocking NYE in rehab
She brought all of the best NYE snacks
Got wild with some delicious NYE Mocktails
Castle Rock in St. Ignace, MI 6/22
We tackled the 170 steps to the lookout point
Mackinac Island 6/24 143 steps to Fort Holmes, highest point on the island. These were the steps we walked up and down. It was pretty cool that people would notice my brace and use me as motivation either for themselves or to encourage people they were with.
Another view of my AFO
Sweetest visitor at rehab
Last but not leastI just want everyone to know I've pretty much mastered motorized shopping scooters by now so if anyone needs lessons, I'm your girl!
