Update

I saw my orthopedic surgeon last week, expecting to schedule the first of two surgeries for the end of August or start of September. Despite my expectation, and having come to terms with my decision, backed by my infectious disease specialist, surgery was not scheduled. I was, understandably I think, quit upset about this - not so much because I want surgery (because I don't), but because I need this infection to go away. The relapse is mentally and emotionally draining, not to mention physical symptoms. I haven't posted about this in the last week because I needed the time to come to terms with what the surgeon said, think things through, discuss them with family, and simply just to calm down a bit. Now that it has been a week, and school has started, allowing things to get back to normal (ish), I am ready to post about it. I am not sure how many people actually read this, but I think it is therapeutic for me to write non-the-less.

Mum and I left St. Catharines just past 9:30 am on May 1. My appointment wasn't until quarter to twelve, but I wanted to drop some stuff at the room I am renting for the spring/summer semester. The new place is lovely. I will post pictures this up coming week. I meant to do so last weekend, but I lost my camera (found it under a pair of pants in a drawer this afternoon... no clue why I put it there. Probably for the best since I didn't get to buying a new bookcase until Thursday - my last one was ruined in the last room I rented, the one with crazy cat lady, when a pipe started slowly leaking, drip drip dripping away and went unnoticed because of how slow the drip actually was - so all my binders and medical books have been scattered across the floor). Anyways, I have side tracked. In between dropping off some stuff and my appointment mum and I had some time. We drove to Westdale and found a lovely little bakery. I am not ashamed to say we splurged on egg bread, flowers shaped like giant daisies, and chocolate croissants. After that we drove to the General Hospital.

We got there with time to spare (a good thing too! since we had to park high up in the parking garage (parking is never easy to find unless you are there at 8 am). On top of that, the elevator was still broken  (it was on April 20th when I went for my CT scan as well).

I like to think, at this point, that the ladies at reception at the fracture clinic know who I am. I have been seeing the same orthopedic surgeon now since the start of 2012, same hospital, same clinic, same staff, even the same day of the week (always Fridays) but then I know the staff see countless people a day. I am just a face in a sea of patients. I know this from being a cashier and making small talk with the regulars (and not so regulars), and now from my clinical experiences - as patients we only see the nurses/doctors so they play an important role in our lives, but for health care providers, the patient is still important but more from the sense of providing the best possible care, and not from forming personal relationships with them.

As usual, mum and I played the waiting game. The time you book for your appointment is not actually your appointment time, but a check in time - this gives room for the doctor to be called away for emergencies or check in on inpatients without outpatients being able to get super pissed off about "not being seen on time". Over the year I have gotten smart enough to bring water and some reading material. I pointed out to my mum, surrounded my a room full of people on crutches, with casts, etc, how ironic it was to be sitting there. Physically, it would appear that nothing is wrong with me. I could just have been a patient returning for a final checkup after a broken wrist or ankle. But my doctors and I know about the infection in my tibia and how not ok that is, how I have been dealing with this for almost a decade, how I have likely been through more than a lost of the patients in the waiting room... I said to my mum "It is wonderful to sit here and know that nobody else in the waiting area know about the infection. It is a form of anonymity".  The infection being invisible to others is both a blessing and and misfortune. On the one hand it acts as blanket, swaddling me up and helping me avoid awkward questions and people staring at me but on the other it makes it hard for people to grasp that something is actually wrong and how serious it is when I mentioned it to them.

We saw my surgeon about 1:30pm. He showed us the CT scan (couldn't see it the week before with infectious disease since the computer kept glitching). Unfortunately, I didn't get any pictures this time. From what I saw I think there are 3 small spots, or "bone defects" on my tibia. According to the surgeon, these defects are there because there has been a tiny infection smoldering away since surgery in 2012. The surgeon said they were much smaller than he was expecting, which is really good. Given that, he doesn't thing we should go ahead with the surgery. This is really confusing for me, since I have always been told that bone infections are really serious. As my infectious disease specialist says, it is not an emergency and surgery doesn't have to be done right away, but the infection does have to come out eventually. But the surgeon said that the infection isn't life or limb threatening, so we don't really have to worry about it right now. He then guided us through what surgery would entail if I would need it - 3 months between the two surgeries, and IV antibiotics through a PICC line in between the surgeries. He was unclear about this, but I am assuming they would continue after the bone graft as well. He said that he could do the surgeries if I wanted him to, but that they are medically not necessary right now. And I just sat there thinking "Huh? In February you were all for doing the surgery and I was just cleared by infectious disease to go ahead and schedule it!" The surgeon said that I seem to be doing pretty good right now, so we should hold off on the surgery. At this point my mum piped in "Of course she looks good! She has been on antibiotics for ten weeks. She is supposed to be doing good. My concern is what will happen when she stops the antibiotics." The surgeon agreed that this a valid point. He said to stay on the antibiotics for another month, as infectious disease advised, and then wait and see what happens. According to him, we should know about 2-3 weeks after stopping the Doxycycline what the infection will do. So that is the goal right now - finish the antibiotics and see what happens. He said "We will wait an see. Perhaps your body will know what to do with itself." And I though (and wisely did not say) "Bullshit. If 16 months of multiple oral antibiotics, two months of IV antibiotics, and surgery to remove the dead bone didn't fix this, and my leg still isn't better and fully healed after surgery three years ago, then three months of Doxycycline, won't do anything, especially seeing how the CT was taken and showed bone defects two months into the antibiotics." So now we wait an see, and the surgeon said he would contact infectious disease an talk with here, which infectious disease said she would do when I saw here the previous week anyways. I called infectious disease the the Monday after (May 4) and left a message, but I have not heard back, although they usually don't call back anyways. The surgeon said if, after stopping the antibiotics at the end of May, things do get worse, we cant go ahead and schedule surgery (he only has a 2-3 week wait time to get me in, so the fall would be no problem.

Meanwhile, my leg still hurts, I am still freezing cold and have chills all the time, am tired, burn easily (thanks a lot Doxy - was outside for an hour and am no beet red - this time the sunburn actually hurts!), and although the night sweats are not that sever at the moment, I am still waking up with the back of my night shirt a bit wet. Oh, and side effects from the Doxycycline. When y twelve hour clinical shifts start next week I can evaluate some more how well my leg holds up, although hope are not high since during the 6 hour shifts last semester I had quite some discomfort and classmates said I was definitely favoring my good leg.

I left the appointment feeling confused and upset. At first infections disease didn't want me to have surgery but now she does Meanwhile, the surgeon at first wanted to the surgery, but now doesn't. They have both flip flopped and propose different things... I don't know what to choose. The surgeon said he could do the surgery if I wanted, but that makes is solely my decision, and I have know clue what to do (relief for not needing to be cut open but afraid of leaving the infection inside of me), and am terrified of making the wrong choice. I cried in the car. Mum and I stopped at Gage park to see the greenhouse - I cried there too... I was a mess. I still don't know what I want to do - will see what happens in 2 1/2 weeks when antibiotics stop. I'm a little bit afraid. Leg still hurts - today was definitely bone pain in the afternoon/early evening. But more than anything I am so over this. I just want to go to sleep and wake up without this being here.