Another Surgery Down! Now, Recovering In So Many Ways (Post Surgery No.6)

Since my diagnosis in 2014, I’ve had some type of brain surgery…every… single… year with the exception of 2018. So, in 2019 just to make up for it, I guess, I had to get 2 “surgery notches” under my belt!

I’m now one week out from my 6th brain surgery. It was something termed a “Burrhole Craniotomy”. In real-people speak, I basically had a GPS-guided needle inserted into my skull to drain fluid from a lesion/cyst that sat in my brain for years caused by the insane amount of radiation I received between 2014 (initial diagnosis) and 2015 (recurrence). When I met with my neurosurgeon’s N.P. before he came in to discuss our options, I basically ticked-off every box for issues related to fluid in my brain. Yes, including being “ticked off” at everyone and everything. Yet, she asked politely, “Are you feeling more irritable?”. My husband had a good laugh at that one. We both answered with an emphatic “YES!”

Prior to the surgery, I became extremely angry and depressed. I never really had those feelings for such an extensive period without them being caused by some horrid med… ahem, Keppra, Dexamethasone. Nope. This time it was all me. Facing a 6th brain surgery, admittedly, gives me some leeway to feel so utterly miserable. I am only human after all.

I know full-well going to that “dark place” isn’t just damaging to my mental health, it makes me physically weak. I need to go into surgery healthy in all aspects-physically, mentally, emotionally, spiritually, etc. Yet, I couldn’t pull myself out of the darkness.

The one thing I was 100% confident in was my neurosurgeon. If I ever turn this into a book, I will absolutely name him. However, for now we will remain anonymous. I know for sure he truly lives and breathes by the Hippocratic Oath, most especially

  • the duty to “do the least harm”; and,
  • “there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon’s knife or the chemist’s drug.

Fortunately, I’ve made wonderful connections within the brain cancer community since my diagnosis. I have no doubt some of those connections are why I’m still here. They’ve led me into the exam rooms of some of the most impressive physicians in this country. My neurosurgeon is one of those people.

So, despite all my neurological issues, including losing total use of my left hand, falling on the daily, constantly losing my memory or at least feeling such brain fog I literally forgot the year, I knew my doc would get me through this. And he did.

Without getting into too much detail, I had consulted with another surgeon first. Wait, I actually wrote a whole post about that experience. Oh well… “blame brain cancer brain”Totally off topic – Can we stop saying, “oops! Must be Mommy brain!”? No, like I’m literally missing a part of my brain that was infected with cancer – twice. Then, it got lots and lots of radiation beamed into it. We just forget shit! Mommies, don’t hate me, please.)

So, that other surgeon had proposed a much more invasive surgery. I was incredibly uncomfortable with his plan. I was very open that I was going for another consult at another hospital. The hospitals in NYC seem to compete with one another like spoiled school girls. I’m not too too concerned with that B.S. I’m trusting my brain with whoever is going to stick by that whole “least harm” idea.

My surgeon utilized the least invasive means possible, I only spent one night in the hospital. My left hand is working again. I’m walking better. The brain fog is still around, but I’ve been on Percocet the last few days. I’m not quite so “irritable “. My husband is very happy about that! I’ve got another surgery notch under my belt. Thankfully, I’m finding myself again too.

They Tried To Make Me Go To Rehab… And I Go, Go, Go

After a week in ICU following my 7th brain surgery, I was sent to inpatient acute rehab. Since they seriously work me here, this won’t be a long, deeply reflective post. I’m definitely “on the go” constantly here.

Nevertheless, I did think it was important to post about my experience thus far.

This is actually my 2nd stint in an acute rehab facility. In fact, back in 2017 when I had to be transferred to an inpatient rehabilitation facility my doctors tried to get me into this particular rehab. Unfortunately, there were no beds available and thus, I wound up in a very good facility. However, it’s nothing like this experience!

I’d say I’m currently in the “creme de la creme” of neurological rehab facilities. It’s pretty rare to have absolutely NO complaints about a healthcare facility these days. Yet, I don’t have a single issue and can only sing the praises of every single staff member. From the doctors to the men who clean the floors, everyone is truly amazing.

I’ve been here for two weeks now, and have another half week ahead of me. Okay. I am getting a bit tired of the same food options, but if that’s my only gripe-that’s pretty darn fantastic!

Before this last surgery, I could barely walk. I was in constant fear of falling, and for good reason. I was basically falling every day. I had no balance. I slept until noon, on good days! My body was so fatigued it took every once of energy to simply get out of bed. Then, I’d merely move to my couch. Let’s just say I blew through countless Netflix movies and series. Around 8:00 p.m. I’d be asking my husband to bring me back into the bedroom. I’d take a quick shower or bath, and I was done.

My day here includes:

•Wake up at 8:00 a.m. & eat breakfast

•Start physical therapy around 10 p.m. and work on balance exercises, walking with and without my cane (Yes!), using the treadmill, walking along the unit, etc.

•Speech/Cognitive therapy immediately afterward

•Lunch at noon

•Then, occupational therapy where I work out my weakened left arm through stretches and a state-of-the-art robot that measures my range of motion. It’s pretty cool, I have to say. We also work on “Activities of Daily Living” (ADLs) like how to step into the shower safely, cooking a meal or doing laundry. Now, I’m doing squats to pick things up and not dropping everything I put in my hand.

•Once my standard therapies are over, I can join a gym class, go to art therapy, and/or horticultural therapy (potting an array of beautiful plants and learning how to care for them).

I can achieve all of this before 4:00 p.m.! Prior to this surgery, I was barely able to function never mind participating in so many amazing activities before the sun goes down.

I’d never imagine eating dinner at 4:45, but it’s the early early bird special here!

By the time I finish dinner, it’s time to shower-up and start getting ready for bed. Who knows? Maybe this night owl just may learn to become an early bird… Realistically though, probably not.

It’s amazing what these dedicated professionals can do for people like me with such extreme neurologic deficits. It’s even more fascinating what they do for people much worse-off than me.

The brain is truly an incredible thing.

Operation Day and the Surgery

Operation Day!

toonvectors-15455-140

I vaguely remember waking up that morning, getting to the hospital and walking onto the surgical reception floor.  I also vaguely remember, practically whispering, “I am here for surgery.”  I waited in the reception area with my husband and parents before they called me back.  My mother would not sit still.  So, I was the one who kept having to calm her down, never mind that I was the one facing surgery.

I was the first scheduled case, so there wasn’t too much time before they called my name.  I walked into a whole new world.  The pre-op room was huge with lines of curtained-off beds.  Could all of these people seriously be going into surgery this morning?  I felt very lucky to have a nurse from Ireland.  It led to easy-going conversation about what parts of Ireland we were all from, and what brought us all to the States.  It helped me forget just a bit where I was and what I was facing.  However, I stayed very quiet.

At that point, I was still scared of needles and IVs (oh, how times change!).  So, they were not fun.  The anesthesiologist came back to talk to me.  He was also comforting and calmed me as best he could.  However, when the moment came to send me into the operating room, I completely and utterly lost it.  I was hysterically crying and found it hard to breathe.  The nurse immediately told the anesthesiologist that they needed to IV some meds ASAP.  It probably wasn’t a good idea to send a patient into the operating room like that.

The meds did work fast, thankfully.  However, I remember being wheeled down the hall and into the vortex of the operating room.  I could hear the MRI machine, as it was yet a noise I was used to – oh, that would come with time.  I stared up at all of the fluorescent lights.  I saw numerous people hurriedly walking around in scrubs.  Then, I saw the anesthesiologist looking down on me.  He asked me to start counting, but I think I got to about the third number before I lost consciousness.

The Surgery

Obviously, I remember nothing of the actual surgery.  That’s surely a blessing, as I’ve heard some patients actually do recall slight moments.  As far as I understand, they used a twilight anesthesia so that they could test my neurological functions with the MRI.  I vaguely remember it coming up, but I can’t confirm that at this moment, nor do I really want to.

So, I underwent a 3-hour craniotomy, defined as “a surgical operation in which a bone flap is temporarily removed from the skull to access the brain.”  The entire tumor was removed, referred to as “full resection.”  A titanium plate was placed in the area and I was then all stitched up.  They placed an awful, horrible gauze turban around my head to prevent swelling.  Amazingly, just a line of hair was shaved, so it was barely noticeable once the turban was removed.  (Getting that turban removed after 3 full days was an incredible physical and mental release).  Then it was off to the post-op recovery room, where I would remain for several hours.