After my MRI that week I walked around with my phone in my hand. I didn’t want to put it down and miss the phone call that I knew was coming. It was ironic when the phone actually did ring that I did what I used to do when I was a teenager and a boy I had a crush on was calling me. I sat there and stared at the number I knew was a Rochester area code and didn’t pick it up because I was too afraid of the person on the other end. I went back and forth in my mind and when I finally resolved to answer it was the same moment that the call rolled through to voicemail. After a brief moment I heard the triple tone letting me know that there was indeed a message from my anonymous caller up north. I took a deep breath and steadied myself. It was eight o’clock at night which meant that whatever the message said it was urgent and could not wait until regular business hours the next morning. Good news can usually last the night…
I pressed play and heard the sound of Dr. M’s voice on the other line, “Stephanie” (that was a bad sign, Dr. M hardly ever called me or I assume any of his other patients by an informal name) “I received your scans and wanted to go over them with you. I am leaving the office now to travel out of town for the next few days but I will have Eli call you in the morning to discuss.”
That was it.
And it was all I needed to know. If the scans had been clean there would have been nothing to discuss. This whole experience reminded me of a cartoon short that used to play on Nickelodeon. It was about a man who had a stray cat show up on his door step one morning scratching the walls, shredding the carpet, and just being basically destructive. He drove the cat out to the country and left it there but the next morning there it was on the front porch waiting for him to let it in. He drove it farther the next time, same result, and farther, you get the idea. The entire short did not have any words but a very annoying song, “the cat came back, the very next day, thought he was a goner, ooooh but the cat came back the very next day. He just wouldn’t stay away” I can’t remember how it ends but I remember the stress I felt as a child watching that cartoon. That poor man just wanted to be left alone and that cat just kept showing up and trashing the place. And that song was so annoying. I could totally relate right now.
I look back on this now and realize it was such a strange cartoon. Thank god my hypothetical children will grow up with cartoon shorts from Pixar with that little squirrel from Ice Age instead of a persistent cat driving a man insane.
I did not tell my parents. Not yet. I recalled the phrase “more aggressive approach” from Dr. M’s previous email and until I knew what that was I decided it was best to wait. I was not sure they could handle much more. I didn’t even ask myself the all-important question, could I handle more? Physically I knew my body could take it but mentally was I strong enough for this? Could I hold it together for myself and the others around me? I wasn’t sure.
In the morning Eli called from Mayo and I closed and locked the door to my office before answering. “Good Morning Miss Fahs, this is Elliot ****, you may not remember me but I was involved in your last surg”
“Yes Eli, of course I know who you are. You are Dr. Moore’s surgical PA. I do not forget members of my team.” I smiled on my end of the phone. Why this man thought he was so forgettable I will never know.
“Yes Ma’am. Dr. M had to travel this week but wanted me to contact you immediately to discuss your recent scans.” And then he paused. I felt bad for him. I said it so he didn’t have to.
“My tumor is back isn’t it?”
“Yes ma’am. We’ve never seen anything like it. I was there, in surgery, there was nothing left. We were extremely thorough.” He sounded apologetic, like all of this could have somehow been his fault. As if he were responsible for a tumor of unknown etiology growing inside my body. It made me feel guilty. I wanted to reassure him.
“I have no doubt you were. “ Big tired sigh. “So what do we do now?”
“Dr. M would like to perform a craniotomy in order to remove the tumor this time. The only explanation is that the point of origin is someplace that we cannot see. Endoscopic resection works with such small instruments in a small space so a craniotomy will allow us to visualize everything. We can find it, get it out, and this will hopefully be your last surgery.”
I felt numb. I remember thinking that I should be extremely upset and that I should be crying hysterically. If my body was a temple, this man had just told me he and Dr. M were going to rip the roof off so they could see better inside the sanctuary.
But I didn’t cry. I didn’t feel anything.
“Ok. Tell me about the procedure.” I said it mechanically. I sounded like Dr. M when he explains a treatment plan.
“Well it will be a lot more involved. We’ll be utilizing Dr. L. You remember him.” I did, he was the neurosurgeon on my team. Until now we had kept him on the bench but evidently we were calling him up for this one.
“For a craniotomy we will need to remove a piece of your skull and retract your brain, we will be visualizing from the top instead of from underneath. The recovery time will be much longer, you will need to be in the hospital for a week at least on complete bed rest and you will need to be here close to us for at least 3 weeks maybe 4.”
hmmm three to four weeks with Dr. J on heavy narcotics could be dangerous. Who knows what I would say to him.
“Ok, tell me about the possible complications.”
“There are considerably more. Infection is the big one, we will resect the dura and then patch it as we have done in the past, and obviously the fact that your brain will be exposed, paralysis of the facial muscles, short term memory problems, having trouble concentrating or putting words together, we will be working close to your optic nerve as always, and the risk of bleeding.”
“Ok, tell me about the incisions you will make. Will they be on my face?”
“No, we will make an incision above one ear and up over the top of your head. We’ll pull the skin down over your face and then when the surgery is complete and your bone flap has been replaced we will pull it back up and staple it together. You should have no facial scarring whatsoever and you have long hair so the scar should be able to be covered.”
hmmm. I knew Dr. M was also a board certified plastic surgeon. I wondered if we could just pull everything a little tighter and get rid of some of the laugh lines on my forehead while we were playing face/off.
“Ok, tell me when I need to schedule this.”
“We’d like for you to come up for scans and consult with Dr. L and Dr. M together the day before the surgery and it can sometimes be tough to get them in a room at the same time so the soonest we could do it is three weeks from now. The tumor is smaller than your past two so I think we can safely wait three weeks. Are you available then?
Sure, I’m always available to have invasive surgery with a three week recovery time.
And still I didn’t react. I am not sure that my brain was really processing what he was saying. This man had just told me that in three weeks my surgical team wanted to peel my face off, take a bone saw to my skull, pull back my brain, and take a look and see what was going on in there. My dura which we had already ripped once, we would rip on purpose this time and then I would have a shunt placed in there to drain CSF fluid while it healed. It was just too much. Like when you try to open too many windows on a web browser and your computer freezes my mind had shut down. I’m sorry, does not compute.
After I got off the phone I simply unlocked the door and went about my day. I did not want to unpack how I felt about it. It was too much. I knew that I needed to tell my family but I didn’t want to. I needed to begin preparing and planning but I didn’t want to. I only had three weeks to prepare. Tick Tock. But this surgery felt different. It felt too big, too risky, too severe. Mentally I couldn’t take it all in. It didn’t seem real.
I googled craniofacial resection on my computer and began researching exactly what would happen to me on surgery day. (Don’t ever do this by the way. It can only scare the crap out of you). I had thought what I had gone through in the past few months was tough, this surgery made the previous three look like routine physicals. If I was going to do this I was going to need support.
I changed my mind. It was time to tell the parents. Where’s my bear? I need some Versed.