Unpleasant News
I have been dealing with a mandibular bone infection for the past five years. It's been a long tough road for everyone, especially my family members who have had to deal with my grumpy butt from time to time. Recently, I have been feeling a bit more positive about the situation since I visited a doctor at the Stanford Medical Center who really made everything make sense. He suggested that I try an extended IV antibiotic regimen that would stretch anywhere between 6-8 months (instead of the 2-3 month periods that I have tried in the past). I agreed with his suggestion talked to my doctor at UC Davis and made plans to start my treatment in March.
But then I started to think about how I have been told, time and again, that if I have dead bone that the infection can hide out in there. So no matter how much IV antibiotics I am given it won't entirely eradicate the source of the infection since there is no active blood supply to the dead bone. I am aware that I have dead bone since the biopsy sample that was taken from my jaw in November was dead bone. This led me to question if there was really a point in trying a long term PICC line/IV treatment situation. So I left a message with my doctor at UC Davis and made a second appointment with the Stanford doctor.
I talked to my UCD doctor this afternoon and our conversation really popped my bubble of positivity (which is really disguised as denial). When I asked him if having surgery to remove the dead bone was a viable option, he told me that yes, it is an option, but the surgeons won't know what they're dealing with until they get in there. So I could be going in for a 'simple debridement' (a surgery I've had previously which just scrapes away layers of bone... like whittling a twig--carefully shaving off layers) and end up removing most, if not my entire right side of my lower jaw. A partial mandibular resection has been mentioned before. This basically entails removing the infected bone and replacing it with part of my leg bone. Not only would I be sporting a wicked scar but I wouldn't have any teeth on that side of my jaw. I was very shocked when this was suggested and I ended up crying throughout the remainder of the surgical consultation. And this was not the last time I cried during a medical appointment.
I have always viewed this drastic surgery with fear, anger and frustration. I have deemed it as "the worst thing that could happen to me" when, in fact, it is not. Having cancer or any other disease that could kill me is a far more difficult and scary thing to face. Dying is actually the worst thing that could happen. I know that in order to view this surgery as one of my choices I need to collect all the facts so I can make decisions about what comes next. It's much easier to spin my wheels and freak out about all the what ifs. And I do this quite often. I allow my emotions to run the show and I end up flailing around like a melodramatic moron. I don't believe that having emotions is a sign of weakness or stupidity... but allowing them to dominate the situation is not healthy or productive. I'm the first to admit that this medical saga has been a difficult emotional journey for everyone involved but you can't chuck logical thinking out the window whenever you receive difficult/upsetting news.
So after I got upset, I sat down and made a list of all my questions that I want to ask during doctor's appointment at Stanford next week. I also made a list of my goals in response to the question: "What do I want?" My most basic goal regarding my health is to eliminate the infection. Or at the very least improve my jaw mobility/inflammation and pain. I'm still anxious since there are so many unknown variables. I also know that my doctor might not be able to answer some of my questions but I think that getting some answers will help. My appointment is next Wednesday, so I can give a full report then. In the meantime, I need to keep my mind focused on job hunting and hope for the best.
But then I started to think about how I have been told, time and again, that if I have dead bone that the infection can hide out in there. So no matter how much IV antibiotics I am given it won't entirely eradicate the source of the infection since there is no active blood supply to the dead bone. I am aware that I have dead bone since the biopsy sample that was taken from my jaw in November was dead bone. This led me to question if there was really a point in trying a long term PICC line/IV treatment situation. So I left a message with my doctor at UC Davis and made a second appointment with the Stanford doctor.
I talked to my UCD doctor this afternoon and our conversation really popped my bubble of positivity (which is really disguised as denial). When I asked him if having surgery to remove the dead bone was a viable option, he told me that yes, it is an option, but the surgeons won't know what they're dealing with until they get in there. So I could be going in for a 'simple debridement' (a surgery I've had previously which just scrapes away layers of bone... like whittling a twig--carefully shaving off layers) and end up removing most, if not my entire right side of my lower jaw. A partial mandibular resection has been mentioned before. This basically entails removing the infected bone and replacing it with part of my leg bone. Not only would I be sporting a wicked scar but I wouldn't have any teeth on that side of my jaw. I was very shocked when this was suggested and I ended up crying throughout the remainder of the surgical consultation. And this was not the last time I cried during a medical appointment.
I have always viewed this drastic surgery with fear, anger and frustration. I have deemed it as "the worst thing that could happen to me" when, in fact, it is not. Having cancer or any other disease that could kill me is a far more difficult and scary thing to face. Dying is actually the worst thing that could happen. I know that in order to view this surgery as one of my choices I need to collect all the facts so I can make decisions about what comes next. It's much easier to spin my wheels and freak out about all the what ifs. And I do this quite often. I allow my emotions to run the show and I end up flailing around like a melodramatic moron. I don't believe that having emotions is a sign of weakness or stupidity... but allowing them to dominate the situation is not healthy or productive. I'm the first to admit that this medical saga has been a difficult emotional journey for everyone involved but you can't chuck logical thinking out the window whenever you receive difficult/upsetting news.
So after I got upset, I sat down and made a list of all my questions that I want to ask during doctor's appointment at Stanford next week. I also made a list of my goals in response to the question: "What do I want?" My most basic goal regarding my health is to eliminate the infection. Or at the very least improve my jaw mobility/inflammation and pain. I'm still anxious since there are so many unknown variables. I also know that my doctor might not be able to answer some of my questions but I think that getting some answers will help. My appointment is next Wednesday, so I can give a full report then. In the meantime, I need to keep my mind focused on job hunting and hope for the best.