The Whole Story: Part Four - Living in the unknown

 

That Monday felt surreal. My husband and I kept saying it over and over the whole week.  I was supposed to have been undergoing brain surgery and then spending the week in the hospital, but instead I was home, with no idea what would happen next.  I had been told on Saturday at the Emergency room that I would receive a call from the Oral Maxillofacial Surgery Clinic (OMFSC) on Monday and they would schedule me to be seen that day or the next. I was also told that the Neurosurgery clinic would contact me sometime this week to reschedule my brain surgery.  I received the OMFSC call before 10 am (the time at which my husband had said he would call if they hadn't) and was given an appointment for Tuesday afternoon. Yes, I asked, and no, they didn't have anything sooner.  More disturbing was the call I got from neuro saying they were looking at early May to reschedule the brain surgery.  That was really difficult to take.  First they tell me that the tumor is in a dangerous spot and needs to be removed right away, and then they say, "but let's wait."  The scheduler said that the doctor wanted to wait until I'd been off antibiotics for a while and I told her that I would be finished in just a week.  She agreed to connect with the doctor and get back to me.

    Tuesday I headed to the OMFSC, not knowing what to expect or hope for.  Something had caused this infection and it didn't seem to be gone yet.  I knew that we had to resolve it before the neurosurgeon would agree to proceed, but thus far almost no one had any idea what was going on.  Having seen every episode of Grey's Anatomy, I should have been prepared for the realities of a teaching hospital. The hospital where I was being seen is a teaching hospital, so a resident, not the doctor I had the appointment with, came into the room to assess my case.  He was clearly baffled about what had been causing my jaw pain, but he was eager to start pulling out my molars!  He targeted three of them on an x-ray, one of which he claimed had some fuzziness at the root, but I couldn't see it at all.  I was stuck between a rock and a hard place because I knew we needed to move forward on the brain surgery, but I was awfully nervous about losing all the upper molars on my left side, especially if there wasn't a clear reason. He left the room to confirm his course of action with his boss and I had my husband frantically calling the endodontist to see if they could get me in the next day instead of pulling teeth. Thankfully, his boss, the doctor I had the appointment with, had more experience. She came in and said that pulling teeth wasn't indicated because the x-ray was clear, but that she was concerned about my sinuses.  She showed me the CT scan they had taken in the ER the previous weekend and in it the back of my left maxillary sinus seemed to have been exploded.  There were little bone fragments floating around and a great deal of inflammation/infection filling the cavity and pushing into the roof of my mouth.  Whether it was like that before or the pressure from the sinus infection compromised the wall that had already been weakened by my jaw surgery 11 years ago I'm not likely to know, but the damage was clear.  She recommended that we see the ENT department down the hall and she went down to consult with one of the doctors there.  Unsatisfied with their response, she wanted to wait until the head of the department was out of surgery and consult with him.  She did so and called me later that evening during dinner.  The surgeon she consulted with agreed that the sinuses were the likely culprit and agreed to see me.  She gave me the contact information for his scheduler and urged me to call right away.  I called and left a message for them to receive the next morning.  

    This scheduler was on the ball and called me before 9am on Wednesday.  She asked if Friday morning would work for me and I pretty much begged her to fit me in that day. I felt intense pressure to get this situation dealt with so that we could proceed with the brain surgery and every day of delay was an additional stress. She said that he had 20 patients to see in clinic between 1 and 3:30pm that day and I'd have to wait a really long time, but I was undeterred. I explained about the brain tumor and said that I was willing to jump through whatever hoops were necessary to be seen as soon as possible, so she agreed to put me on his schedule for that afternoon. We headed into the City after lunch, expecting a long wait. They actually brought me back right on time for the appointment they had scheduled.  Again, at the teaching hospital, a resident came in to do the preliminary exam, but before she had even finished asking questions, her boss came in and took over.  He spent a good 30 minutes with us, amazing with his case load, and covered the situation in great detail.  A part of this was using a scope to examine my nasal/sinus cavities - NOT fun! The hardest part of this appointment was that he did not want to tell us what to do, but left the decision in our hands. That meant we were trying to ask good questions and read his face for what he actually thought was the best course of action. The two primary choices were: finish the antibiotics and see if they help or not or do an endoscopic sinus surgery to clean everything out. While the first option was less invasive, it was also less certain and left more question marks regarding my readiness for brain surgery, so we opted for the latter.  They were able to schedule me for sinus surgery the following Tuesday and sent me home with instructions for preparation.  

    As I sat outside waiting for my husband to come pick me up in the car, the neurologist office called and said that they could offer me April 24th as a surgery date.  I took it in hopes that I would be ready. I'll be doing pre-op again on the 19th and I'm guessing that's when we'll assess whether we can proceed or not based on how the sinus surgery goes.

    So the rest of the week has been really strange.  I feel like these extra four weeks are a gift, a stay of execution in my dark sense of humor, but I'm not sure what to do with them.  My initial thought was to travel.  There was a cruise that I had really wanted to go on in a week, but then I thought through air travel and being on a cruise ship with thousands of people and realized that was a hot bed of infection and risk.  If I'm really serious about this brain surgery, I need to do everything reasonably in my power to make sure that I am in good shape for it. So then what?  Do I work on my travel agent training?  Will I even be able to be a travel agent after the brain surgery?  Would it be a waste of time?  Is there anything of value that I can do while making sure not to compromise my immune system? 

Here's the thing: Knowing something is wrong but not knowing what is really hard. I was so very grateful for that OMFS doctor who went the extra mile and figured me out then got me plugged in where I needed to be. At the start of the week we were living in the unknown - with the infection, with the future of the brain surgery - but God knew all of it and we were held in His hands. 

The Whole Story:

Part One - The Call That Changes Your Life
Part Two - When "Wait and See" Wouldn't Sound so Bad
Part Three - Reflecting on My (Almost) Presurgery Week
Part Four - Living in the unknown
Part Five - Taking Opportunities as They're Given
Part Six - The Big Event
Part Seven - How Many of you are There?
Part Eight - Beginning the Journey of Recovery
Part Nine - The Unimaginable
Part Ten - I guess that's better?
Part Eleven - A Day in the ICU
Part Twelve - Long Haul ICU
Part Thirteen - Hair Today, Gone Tomorrow
Part Fourteen - A Soft Discharge
Part Fifteen - The End of the Chapter