It’s officially a week and a half since my 12-hour brain surgery/plastic surgery/infectious disease surgery/whatever it is that just happened to me.
I know that there will be several (okay A LOT) of posts that will cover what has happened over the last few weeks, but in a simple, non-medically trained nutshell… all of my radiation treatments caused my brain cells to die, which then caused the skin cells around my surgical/radiation area to breakdown, causing a serious infection that led to my titanium plate being exposed. Enter an infectious disease team, a plastic surgery team and my established neurosurgery team…
I was advised that the infection would obviously have to be surgically cleared out, that my plate may or may not have to be removed, and that a portion of my stomach would have to be taken to create a new skin flap to cover the area. Little did I know that I would wake up with my stomach now making up just about half of my head, as well as a giant incision starting from the top of my chest down my abdomen. Oh, and my bellybutton is also now about 6 inches off from where it was just a few weeks ago.
So, I feel like Freddy Krueger and I walked into a bar and well, whatever happened, he clearly won.
I am thankful beyond words that I am alive, that I am recovering remarkably well and that I am even able to write this post, but… this time, the vanity thing is tough.
I feel like a monster. While I know rationally, it will get better – the swelling will reduce, the bruising will fade, etc. – it’s just really, really hard this go around.
With my first surgery, you wouldn’t have known I’d even had surgery. My hair only began to fall out a few months later due to radiation. I thought that was hard. However, I got a fantastic hairpiece (clip-on, not even a full wig) and absolutely no one could tell I had a bald patch hiding underneath.
Time went by and my hair started to grow back enough that I didn’t even need the hairpiece. I only needed to style my hair the right way and all was okay. I even left the hairpiece hidden in a drawer to get knotted and matted, thinking I really wouldn’t need it again. How naive!
So, along came the second surgery and more hair had to be shaved down, but honestly, it wasn’t too bad. I wasn’t going to cry over it. Yet, once again, radiation came around. I was actually away on my First Descents trip when my hair began falling out in huge clumps. I stood in the bathroom at our camp site just crying while running my fingers through my hair as it immediately fell out. Thankfully, being on a trip with cancer survivors, they all understood my hysterics. Due to the high-dose radiation, this time my scalp looked red and severely burned (“angry” as one person perfectly described it). It looked worse than before, but by the time it was all said and done, I wiped the dust off the hairpiece and adjusted to it all. I also continued to rock what I like to call “the crazy bun.” It was disappointing, sure, but manageable.
But now…since ya know, my scalp is significantly made up of my stomach, the hair will never ever grow back and it’s definitely not just a bald spot either. (As a darkly humourous aside, my scalp now has freckles that were formerly members of my abs). Sure, they say the swelling will go down too. However, it’s really hard to imagine my head ever looking semi-normal or symmetrical. There are sutures everywhere and because the plastic’s team had to connect artieries behind my ear, there is yet another incision there.
I’ve been dealing with the whole bald spot/scalp/hair issue for 2 years now. I get it. I had brain cancer. I can’t expect that my head would look compleletly untouched. However, I was not prepared for the additional disaster area of my chest/abdomen. Again, I had brain cancer. This wasn’t supposed to involve abdominal surgery with permanent scarring down the front of my body. That wasn’t in the manual!
My stomach is also so swollen that I look about 10-months pregnant. I am a very petite person. It’s not a cute look. In being such an intensly active person, my core was always so strong. Now, I can’t stand up straight because of the sutures and the swelling. I hobble around like an 80-year-old woman.
I hate that my poor husband has to look at me this way. He is beyond amazing and justifyably tells me I’m being crazy. He is not afraid to look at me, but I am.
I feel petty even complaining about these things. Big picture – I’m alive! So, so many brain cancer patients are not as fortunate. Also, I’m sitting in my own home, on my couch, next to my incredible husband and my adorable pup. I am not in the hospital. I am not in a rehab facility trying to fight serious neurologic side effects.
I still do have everything. I just wish I had never walked into that bar with Freddy a few weeks ago. I should’ve just stayed the hell home.
I’ve now suffered two seizures in my life, just about two years apart from one another. I’ve had some intermittent “seizure-like episodes”, which frankly would be classified as seizures, but for me they aren’t even in the same realm as the other two seizures.
The first was a grand mal/generalized tonic-clonic seizure – the dramatic type that people generally associate with the term “seizure.” I remember it starting, but obviously, I had no idea what was happening.
I had been having some strange sensations on my left side, almost like a feeling of electrical pulses or currents creeping up from my foot into my leg. On one or two occasions, that feeling traveled all the way up my left side into my face. Of course, I later learned that these were in fact seizures. However, I thought I was perfectly healthy, in tip-top shape. I never imagined in my wildest dreams that these episodes were seizures, let alone the first signs of brain cancer.
As for the grand mal “big daddy” seizure, it began with that same creeping feeling beginning in my left foot. It started traveling up my side and very suddenly, my chest became extremely tight. There was almost this warming feeling/rush too. It’s a sensation I find hard to describe, but it’s what they call the “aura” before the seizure. Although I could technically still breathe, I began clutching my chest. At the time, I was wearing a baseball cap and lifted it up thinking maybe that would help give me some air. It was at that exact moment I demanded 911.
Just after that, I lost the ability to speak and all control of my left leg. I actually recall thinking to myself, “Why is my leg jerking like this? I’m not telling it to do this.” Almost like an out-of-body experience, I was looking down at myself and seeing this happening, but having absolutely no idea what was happening. While I don’t remember the specific chronology, around the same time my left arm and head began violently jerking. It was then that I lost total consciousness.
Apparently while I was unconscious, but the seizure still continued, my contacts popped out of my eyes. The portion that happened while I was awake was violent enough. I still cannot fathom what it must have been like at its peak (I guess if that’s the right term to even use).
I was taken to the E.R. by ambulance. Looking up at the ceiling and the florescent hospital lights flashing by while I was being wheeled into the E.R., I remember the EMTs asking me my name. I didn’t know it. They asked me if I could tell them where I was. I couldn’t. All I could utter was, “I don’t know” over and over again. Even though I can only recall a very brief portion of that time, one thought that still haunts me to this day was the feeling that this was the end. I was going to die.
After being seen in the E.R., I learned that there was a lesion on my brain, which had caused the seizure. Obviously, after several more tests and ultimately brain surgery, it was confirmed that I had cancer. The strange thing though is that the seizure scared me more than cancer and I believe it has left me with so much more PTSD.
Following the surgery, did I worry the tumor would recur? Of course. However, if that did happen, I believed it would be a progression that I could sort through/deal with/face over a period of time. Yet, I would never know when a seizure could happen. I had no control over where I would be, who I was with, what I was doing, etc. There was nothing I could do to ever prepare myself. Sure, I took several seizure medications, but there was always that chance. Also, for quite a long time, I believed every little sensation was the beginning of another seizure. I truly lived in fear.
As with most things in life, as time went by, things got better. I didn’t worry every time I left the house about what could happen if a seizure came on. I worked out without the fear of collapsing. My doctors cleared me to drive, although I never traveled more than a few miles on my own. I even began feeling comfortable on the subway again, which had constantly frightened me. (Being enclosed in an underground subway car, filled with people who aren’t 100% likely to rush to your aide, without any easy access to medical attention, was the cause of many anxiety filled days).
Ironically, just a few weeks ago I thought back on that intense, overwhelming fear of a seizure and truly relished in the fact that I had almost entirely overcome it. And then…
As I sit here today, I am not even two weeks out from the second major seizure of my life. So much of the fear has once again reared its ugly head, and now there’s more.
I don’t know which of the two seizures were more frightening, but as of now, the second one is winning. If the first was “big daddy” this one was “big momma” and we all know, momma is usually scarier than daddy.
Without fully detailing the chaos that surrounded the second seizure, I had been tapering off steroids in the weeks prior due to some vague blur on my last MRI. (It’s believed that the taper contributed to my second seizure, as no one had thought to inform my neurosurgeon of the taper and he would have never reduced the steroid had he known, but… anyway). During that time, all of the radiation treatments had caused my cells to die, breaking down the skin around my surgical site, and causing a major infection. It’s never fun to see your titanium plate exposed! So, after days in the hospital, I was finally scheduled for surgery on a Friday. In an effort to let me rest, sleep in my own bed and prepare for at least another week or two in the hospital, I was sent home Thursday.
I went to bed Thursday evening having to mentally and emotionally prepare for my third brain surgery. As if that wasn’t enough… I woke up at some point in the middle of the night, violently sitting up. There wasn’t a second thought in my mind. This was a seizure. I don’t even think my body and mind had time to experience the “aura.” I just knew immediately what was happening.
As I sat up, I yelled at my husband to wake up, screaming, “I’m having a seizure. Call 911. Get my Ativan!” The poor man was barely conscious and yet I was in desperate need of help. The seizure didn’t begin too intensely even though I realized what was happening. I was even able to continue yelling at my husband to follow my orders!
The twitching began in my left leg exactly as last time and started to creep up my left side into my left arm and hand. However, the spasms weren’t bad enough yet because I was able to actually open my pill box and take some Ativan. Almost immediately after that though, it became very ugly.
My entire left side began to violently twitch and jerk. My left hand became clawed and my toes were curled under. My speech became extremely strained until I lost it completely, as I began to literally snort and drool. I was able to use my right hand to steady myself against the bed, at least keeping me safe from falling off.
I think one of the strangest sensations during the whole experience was that I remained completely conscious, knowing exactly what was happening and worse, what could happen. My doctor had always told me that if I ever had another seizure, I would have to do my very best to stay calm. I never thought that would ever be possible, but this time, I did say to myself that I needed to breathe and hope that this would pass. Frankly, my attempt at staying calm utterly disappeared at the moment I could only communicate by snorting.
And just as it had started, the jerking and twitching began to slowly subside. I could talk again, thankfully. However, my entire left side was basically dead. I sat there trying to move my left leg. Nothing. I tried lifting my left arm. Nothing. I picked up my arm with my right hand, but it just flopped onto the bed like a dead fish. My fingers also remained clawed. I was completely convinced I was paralyzed and a hundred scenarios rushed into my head, while I imagined all the things I’d never be able to do again.
Once the EMTs arrived, I was able to communicate fully, but the sensation on my left side had yet to return. After a few minutes of oxygen, I began to feel what I thought was another aura, but thankfully, it was actually the sensations in my extremities coming back. Slowly, I was able to move my leg and my arm, although they were clearly weak. I was also able to move my fingers around and no longer felt like a clawed lobster woman. Enough time had passed that it didn’t seem likely another seizure would come on. So it was back to my hospital, hours early for my third brain surgery with the added bonus of a sudden seizure.
It’s now almost two weeks later and once again, my 12-hour surgery is not what keeps me up at night – it’s the fear of another seizure. I hope and pray that the feelings that consumed me after the first seizure subside again after this experience. Unfortunately, it’s going to take some serious therapy, meds and strength of mind to get back to where I was just weeks ago.
I certainly never expected to be sitting here, again, awaiting brain surgery. I started writing this blog with the notion that I would be reflecting upon past experiences and how they affected my life now. I also believed that sharing my experiences could possibly comfort or maybe even inspire others facing similar challenges. I didn’t think I’d ever be writing about facing surgery once again, in real-time, live with a studio audience. I didn’t think I’d have to get down to the nitty-gritty of infection, radiation necrosis, my skin cells dying and the multitude of things that have transpired in less than 24 hours.
It’s now late Wednesday morning. In the later afternoon on Monday, my surgical area started to feel strange – a little tender. I asked my husband to look at it for me (I cringe when I have to ask ANYONE to see that area, including him). He mentioned that there was some funny greyish, bluish area he had never seen. Of course, I immediately thought, “That sounds bizarre.” Since my surgical area is in an awkward spot on the top of my head, which requires me to finagle various mirrors to actually see, it took me a while to get a good view. Of course, when I did see it, it looked bad… very bad. To my non-medically trained eye, it looked like my titanium plate had become exposed. I know it hadn’t looked like this just days earlier. What the hell was happening?
Thank god my team of doctors trust me with their email addresses. I forwarded pictures of the site with the questions, “Is this my titanium plate? Am I crazy? Please tell me I’m crazy.” Turns out, I was not crazy.
My neurosurgeon replied relatively quickly with the instructions to get down to the UCC. It looked like a “wound breakdown/infection.” He would have a fellow waiting for me. I would need an MRI, antibiotics and admission into the hospital. And this was all from just a picture.
I’m convinced the UCC in a cancer hospital is pretty much one of the worst places on Earth. If you’ve never been there, consider yourself very lucky. There are hoards of people, including patients, family members, frantic nurses and staff, and maybe a doctor or two sort of wandering around. Everyone is at their peak of stress. People are being wheeled in by EMTs. There are patients lined up along the corridor on stretchers because there aren’t even enough triage rooms for them. On one occasion, I listened to an older man groan, “Help me.” over and over again. I am fortunate enough to say, I have never been on the top priority list at the UCC. I pray I never will be because it means things are indeed very wrong.
However, in not being a priority, you must be prepared to wait hours upon hours to be seen by a nurse, then a fellow, then maybe a specialist, or two. One particular time, I waited over 9 hours to finally be seen by the whole UCC team. Monday night, I waited over 2 hours to be seen by the fellow who had been specifically told by my neurosurgeon I was coming in to be admitted. As an aside, when he found out how long I had been waiting, he just shook his head and said, “Well, I’ve been waiting for you too.” Neither of us understood why no one listened to me about the fact that the fellow was actually waiting for me specifically. One staff member even snarkily said to me, “We don’t just have doctors here waiting for patients.” That’s the beauty of the UCC though… unless you adamantly demand things and frankly be pushy as hell, good luck getting anyone to notice you. And this is at an excellent hospital. I can’t imagine what it’s like at a less respected one.
So, what else could I do at this point? Oh I know – wait some more. It took over 3 more hours to get a bed for my official admission. I fell asleep in the reception area. When I finally woke up, there was only me and an older man in a wheelchair, who told me he had been there for almost 12 hours. I guess I was lucky, huh?
I slept strangely well Monday night once I finally got to a room. Ignorance is bliss I guess. By Tuesday morning, my life had once again turned upside down. I learned that the radiation had killed the cells around my surgical area, which had broken down the skin overlying the titanium plate causing an infection. I would certainly need surgery. The question was, how involved would the surgery be? I knew that my neurosurgeon would have to again open the flap from my prior surgeries. What we don’t know, still today, is whether the old plate will need to be removed and replaced. My surgeon will need to debride the wound removing all of those dead cells. What I thoroughly did not expect to hear was that now, plastic surgery will need to be involved.
Plastic surgery will have to team up with neurosurgery to attempt to cover the titanium plate, whether it is the current plate or a new one. Since the skin around that area has now been pulled and prodded, and died from radiation, there likely is not enough skin on my scalp to cover the area. Now, they will have to take a portion of skin from my stomach attached to an artery. That skin must be able to survive, which is why they will need to attach an artery to allow blood flow to the area. I am facing a potential 12-hour surgery with a recovery time of at least 1-3 weeks in the hospital. And I thought 3 days after my first 2 surgeries was bad.
As of right now, I still don’t know when I’ll have the surgery. It could be tomorrow, or sometime next week. Either way, I’m scared as hell. I had my moment of utterly breaking down, crying uncontrollably, fearing that this time I would definitely have serious side effects. Maybe it would even be worse than mere side effects. Maybe this time, I wouldn’t come out. I mean, how many times can I test fate at this point?
After my “moment” I have just come to the conclusion that I cannot control what will happen – I can only control my reaction to the situation. If I fear the worst, I will just go to that dark, horrible place. No one wants to go there. I’m choosing, or forcing myself, to stay calm. I am making jokes with my surgeon and at least trying to get the residents on the team to smile. They don’t smile much, or take humor well. I am eating a LOT because now I have a good excuse for fattening up my stomach. I’m editing photos from my recent trip to Costa Rica. Friends are calling, texting, emailing and stopping in to see me. And of course, I’m writing.
So, here we go… again. Keep calm. It’s only brain surgery… again.