[past]: the operation and off to rehab

the night before surgery, my family and Troy gathered in a small staff room so we could have family prayer and so my dad could give me a priesthood blessing. i knew if the surgery was to go well, the Master Physician, Jesus Christ, could make that happen. just like He healed so many people when He was on the earth, i knew He could heal me. in my church, we believe the priesthood is the power of God given to his children to use worthily. in essence, a blessing from my dad, if he was worthy and if i could have enough faith, would be as if Christ himself were saying the words my dad said in the blessing. among those words, i was blessed that the surgery would go well, that the surgeon would take out everything from my brain that didn't belong and that i would one day be able to run and move like i used to. what wonderful promises if i can have enough faith in Christ!

although i was still nervous for the surgery, i was actually beginning to feel at ease. i realized that everything was in God's hands, and that whatever He wanted to happen to me would happen.

originally scheduled for early afternoon, my surgery did not take place until the evening of March 2. the day before, a doctor measured my head and marked it with colored lines and dots that would help him place specialized equipment on my skull so he could assist Dr. Weinand with where to touch my brain and where to avoid. the morning of the surgery, my sister Angela woke me up early to remind me to eat one last meal before i couldn't eat or drink anything. i tried to eat cold cereal, but my stomach was a tangle of nerves. i spent much of the day sleeping, praying and trying to relax.

as the surgery drew closer, i felt more calm. i remember praying and asking Heavenly Father to help me live though the surgery. i promised that if He would let me live, i would spend my life as a witness to the healing, miracles and peace brought about in my life through faith in Jesus Christ. that is one of the reasons i started this blog. :)

i was wheeled to the pre-op room, where i waited with my parents for over an hour. i managed to stay remarkably calm. i had a very kind nurse who was from India. she put a cap over my hair, searched my arms for places to insert new IVs and an art line, explained the timeline of the operation and chatted with me. an anesthesiologist briefed me on the drugs she would give me. young med students flitted around on the other side of the room while tending to an obstinate (and hilarious) old man, and i felt a twinge of jealousy for their good health.

sporting a sweet cap and waiting for my turn in surgery

finally, it was my turn. the anesthesiologist gave me the first round of drugs that were meant to relax me. i was then wheeled out of the pre-op room to a spot above which hung some mistletoe. this was where i was supposed to kiss my parents and go on to surgery. "see you on the other side!" i joked. whether the other side of the surgery or the other side of death, i figured i would be correct. it was then on to the operating room. i vaguely recall a few details: lots of people. metal tables. bright lights. someone addressing me. and then, sleep.

according to my family, i was in surgery for about 3.5 hours. Dr. Weinand had estimated it would take twice that, so my family and Troy were surprised and pleased when he came back early with the good news that he "got everything" -- meaning bits of tissue and the blood that started this entire journey. he further explained that he didn't know what the mass was, but that he would send it to pathology to be evaluated.

everyone came to see me in the recovery room. i apparently said some things, although i don't remember this part at all. Troy tells me now that i got a CT scan, but the first thing i recall was what came next.

i guess i had expected to go through the whole clawing-my-way-back-to-consciousness process in a hospital bed, so i was somewhat surprised and pretty dismayed when i woke up while being loaded into the MRI machine. i wasn't with it enough to protest, but i remember being nervous nonetheless. my dear mother tried to plead my case to the doctors; she knew how difficult MRIs had been for me and didn't think it was fair for them to put me through it again right after surgery. despite her efforts, i wasn't getting out of the MRI. like it had done in the days leading up to surgery, my right leg began violently spasming before the MRI commenced. the MRI attendants were finally able to bend my leg and tape it in that position so i could remain still during the procedure. while inside the obnoxiously loud machine, my mom stroked my left foot -- her way of telling me she was there for me and that i was going to get through those tense 40 minutes.

i woke up again on March 3 in the late morning. this time, i was in a room brightened by a few rays of the Tucson sunshine, and a male nurse was offering me a plastic cup of some suspicious orange liquid. "your potassium is low, so you need to drink this," he said. to my own amazement, i didn't ask any questions, but instead took to swallowing the rather nasty orange-flavored drink. Troy soon came in, along with a few family members (i think!) to greet me. i found out i was in the pediatric ICU and that just a few weeks earlier, Gabby Giffords had recovered in the very same room after her miracle surgery.

between my noddings off and wakings up, my male nurse made sure i was comfortable and lightened the mood with his heavily sarcastic jokes. i was in pretty good spirits until…dun, dun DUN!…they said they were going to remove my catheter. (side note: i had never had a catheter before, and the feeling of releasing liquid but not really peeing was crazy!) instead of the male nurse performing the removal, a CNA was asked to do it. by this time, my sister Alicia was in the room, and thankfully so! since she is a nurse, she noticed that the CNA was about to yank the catheter out without properly deflating the balloon. Alicia stepped in, guided the CNA (who had never removed a catheter, come to find out) and saved me a whole lot of pain down below. gotta love having a nurse in the fam!

with less than 24 hours of ICU time under my belt, i was returned to my hospital room on the 6th floor. there, i got a glimpse of myself in the mirror: the left third of my head was completely shorn, and the rest was covered with a gnarled, bloody mess of hair. i still had colored marks on my scalp and forehead, as well as a small bloody hole in the center of my forehead -- which we assumed was where some sort of measuring or monitoring device was anchored during surgery.

once i started feeling more with it, i asked my nurses if i could have a bath. i wanted to get the stinky blood out of my hair, and, oh yeah, take care of the more than two weeks of leg and pit growth that had accumulated. (now when i tell Troy that i really need to shave, he reminds me that he has seen much, much worse!) a wonderful CNA named Katherine offered to give me a bed bath, and my mom volunteered to do her best with a crappy hospital razor. together, they then tried to comb through my matted hair and wash it without disturbing the fresh, five-inch scar on the left side of my head. eventually, scissors were brought out to cut off the sections of hair that were way too matted to save. in the end, i was left with uneven yet reasonably clean hair on my right side. apparently, according to Troy, my head smelled like sawdust despite the wash. better than blood!

on Saturday morning, less than three days since my surgery, my discharge paperwork was in the works and i was being prepared to move into a rehab hospital where i would undergo intense therapy for about a month. after learning about the various rehab hospitals in Tucson, my parents and i decided on Oro Valley Hospital, mostly because it was close to my parents' house -- a welcome change from UMC.

in the afternoon, i said goodbye to my nurses, my family and Troy and was loaded into a medical transport van driven by two middle-aged men. i tried not to let me nerves show, but my heart pounded all the way to the rehab hospital. i was so scared that my body would turn on me again; after all, i was barely out of surgery and wasn't completely convinced that i was in good enough shape to be moved yet. i was familiar with the route the drivers took and pleaded with traffic to abate and lights to turn green so i could quickly get to safety. finally, we arrived at OVH. i was wheeled to the third floor, inpatient rehab unit, room 343: my home for the next month where i would struggle immensely but also make more progress than i would have ever expected.


[present] the state of things: one year later

life has been rather hectic lately, but i would be remiss if i didn't write a post today -- the one-year anniversary of my stroke. not a day goes by that i don't think of my time in the hospital, of the support and blessings i have received or how incredibly happy i am to be alive. every February 21 will be a holiday for me!

if you're like me, you're thinking, "only one year?!" in many ways, it feels like it has been longer than 365 days, but i think that happens when so much takes place during a period of time. since i haven't posted in a while, i thought i'd give an update on my recovery and the goings-on in my life.

if i had to give a percentage of the amount i have recovered, i would probably say 60% (if it's a good day! ). my arm and hand are doing remarkably well -- so much so that my therapists and doctors are surprised at their progress. from my arm down, i can function pretty close to how i could prior to my brain fart. how 'bout that, dr. brain surgeon who never said i'd regain my fine motor skills? :] i used to be bummed that my arm/hand were recovering quicker than my leg/foot, but my occupational therapist has reminded me multiple times that being able to properly use my upper limb is more crucial to daily life than the opposite alternative. i have come to agree! i can cook, do crafts, write, type, have thumb wars, etc., and i have even been told on multiple occasions that i have a firm handshake…just like old times!

from my elbow up, things are a bit more sketchy. i have quite a bit of tone/spasticity still hanging around in my biceps, shoulder, traps and so forth. this makes my movements less than smooth, especially when i do anything that requires me to lift my arm. when i am cold, nervous, stressed or sick, the tone increases. i have to be sure to wear a jacket when it's chilly out, otherwise my arm will curl up and in and get stiff. and, you know how babies startle easily? same here. anytime there's a loud noise or some kind of surprise, my arm jumps on its own. this is funny only half of the time.

now onto my leg. well, mr. leg is stubborn, but i will break him down at some point! i have some crazy tone in my quad and around my calf. the tone around the calf area makes my ankle turn in severely and makes it really hard for me -- or anyone else, for that matter -- to flex my ankle up (dorsiflex). seriously, it's like moving cement sometimes. then, if i make it a point to relax, the tone releases a bit. the tone in my quad makes my leg spasm when i'm cold, nervous, stressed or sick. the worst part of this is that i can no longer hide when i'm nervous! try telling somebody you aren't nervous when your leg is vibrating as you walk. it's just not convincing.

i still use a brace (AFO) to walk. it's awesome and i don't know how i'd function without it. i can curl my toes if i have something pressing up against my foot (again, like a baby). i have been using electrical stimulation to help strengthen and retrain my evertor muscles on the outside of my leg so that i can move my foot outward. because of it, i can now move my foot outward on my own a few times, but only if i am relaxed. if not, the tone kicks in and my foot pivots inward instead. according to my therapists, i can slightly plantarflex -- aka push my foot down. i can't do it well enough to notice it myself, though.

with the New Year came a new set of therapy visits from my insurance. hooray! toward the last part of 2011, i was paying for therapy out of pocket (thanks to a very benevolent grandfather) and doing most of my exercises at home. since moving up to Tempe at the end of January, i have been to a new therapist twice. his initial evaluation was rather discouraging because it highlighted all the things i still can't do or still need to work on. it went something like...

"oh, your gait pattern is flawed. you are expending twice the energy because your walk is inefficient. your knee should be straighter when you walk. wow, your tone is really strong! can you move your ankle out at all? oh, nope." and on and on.

it's not like this guy was rude about his assessment findings; it's just that i hated hearing all the negative feedback all at once. most of the time, i try to focus on the things i can do, especially after not being able to move my right side at all, so the evaluation was a rude awakening to how much work is still left. while tough to swallow, i am glad this new therapist has recognized areas where i need to improve and is eager to help me get there!

DRUGS (the good kind)
i take a muscle relaxer called Baclofen three times per day to help control my tone. being that it is a muscle relaxer, it relaxes the rest of me, too. if you stick me in a car or on a couch with nothing to do, i will invariably fall asleep. i need naps pretty often (like a baby!) to combat the effects of the medicine, so i am nervous about how that will all work out when i have less time to snooze. the medicine also makes me shaky and hungry if i don't eat and drink often. thus, i also need frequent snacks (baby!).

i recently completed 12 [very expensive] hours of training on a left-foot accelerator. since my right leg isn't healed enough yet, the only option i had to be able to drive was using a gas pedal positioned to the left of the brake. i am waiting on the DMV to give me a road test, and if i pass, i will be given a restricted license -- meaning i can only operate a vehicle with the proper adaptive equipment. i am soooooo looking forward to driving again! Troy is, too, since he is the one who has to take me everywhere. ev-er-y-where. he says i will have to drive us around for six months straight once i get my license. :]

i'm also nervous to drive with the new equipment. apparently, left-foot accelerators are really dangerous and aren't prescribed very often. after going through the training, i can see why! from a very young age, we all learn to slam on the left pedal when we need to stop suddenly. my left-most pedal is now the accelerator. eek! let's all hope i don't kill myself.

as of December, my brain still has a clean bill of health! the possibility of the tumor recurring scares me even more than the possibility of always having stroke symptoms, so i was incredibly thankful to hear the good news from my surgeon. i will go back in May for another MRI. if that one is clear, i will do an MRI only once a year instead of twice. i am still being followed by a cancer doctor. i see her every six months and will do so for five years, just to be sure. she takes my blood and feels my glands at each visit. it's comforting to know my health is being closely monitored.

SPIRITS (not the boozy kind)
all in all, my spirits are pretty high! some days are better than others, but that's the same for all of us. occasionally, especially on days when i have a harder time moving, i think about all the things i miss or worry about: what if something else is wrong with my body? why do i feel weird today? (this is a common one since i am hyper-aware of every aspect of my body.) what if the tumor comes back and i die and leave Troy behind? what if i never can play softball or act again? i wish i could go on hikes with Troy. how am i ever going to be a mother if i can't balance well or hold things with my right arm? i wish i was healthy like everybody else my age and didn't need to spend so much money on medical expenses. how will i pay for them all?

after counting my blessings -- and normally a pep talk from Troy -- i do a good job snapping out of these negativity ruts. i have accepted that my life will be different than i expected, but i have also not given up hope that i will be healed.

so, what's next? in short, i plan on year #2 being wonderful! i am marrying the best man i have ever met on February 29, and we will throw a big shindig for all of our family and friends the next day. (i can't believe it's actually going to happen. i have dreamed about marrying Troy for six years, people!) we will live in an apartment in Mesa. since we are both currently unemployed (good for wedding planning, bad for anything else), we will do some major job searching right away. in May, i will start a 18-month Certified Occupational Therapist Assistant (COTA) program at Pima Medical Institute. i hope i can use my experiences as a patient to become an effective therapist. Troy is considering returning to school, too, so we will soon be introduced to the joys of student loans!

as i reflect on this last year, there is so much to be thankful for. i am humbled by my blessings and by the support and love showered on me. please keep me in your prayers. i have improved so much, but the road ahead is still very long. i can use all the prayers and faith i can get!

here's to better health, continued progress and lots of love in the next 365 days. :]