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.