Tick Tock....

T-minus 13 days. What have I been doing? Obsessing. Shocker, I know. Googling every possible search term related to the procedure: "Free Vascularized Fibular Graft." The fear of the unknown was causing mass amounts of anxiety. I had to find out something...anything.  I tried various combinations and at first, nothing. Then, I hit a few forums that discussed "Bilateral AVN" plus "core compression." I had previously read the articles, so I just skipped those. I decided to check out the forums. BAD IDEA.


First of all, it seems only the people that had horrible surgery experiences on their hips actually posted. I read everything from "I am still in pain ten years later, still can't sleep due to pain and it's been 8 weeks" to "I had the painful surgery and ended up doing Total Hip Replacement (THR) anyways." I was confused and, more than anything, scared. What if I ended up picking the wrong treatment? Honestly, I wasn't really given any other viable options, but maybe I should back out? Maybe there hasn't been enough second, third, or fourth opinions? Then after I thought about it for a few minutes, I concluded: Well it seems as though only people who had negative experiences posted. Where are the people that had good experiences and outcomes? They gotta be out there. 


So, I began to furiously email ANYONE I could think of for more factual information: My brother, my sister in law, my brother's friend who works with orthopedics (whom I met once), people from the forums that didn't have the surgery yet,  as well as the (saintly) nurse that has helped me each step of the way with pre-op procedures, questions, and paperwork. 


I fretted the rest of the day. I snapped at my parents. I had no patience with the children. I felt as though I was making the wrong decisions. I had images of painful drains, tubes, immobilization for weeks, scars, sleepless nights for weeks, and worst of all, possible feelings of regret. Finally, by the time I went to bed and wasted all day being frustrated and cranky, my nurse emailed me back. She emailed me that she CAN get me into contact with people who have had the same surgery recently. Also, there are not many resources or websites out there because it is RARE. So rare in fact that only TWO doctors in the whole United States can actually do it, mine being one of them (the other still being at Duke University). Somehow, that information, the fact that it is so rare, put me at ease. I mean, what are the odds all those unhappy patients that are still in pain on these forums had MY exact surgery? 


I went back to the forums. I needed to. I found out that the surgeries THEY referred to were not exactly what I am getting. They are getting various forms of treatment for AVN including core compressions, THR, etc. Similar, yes, but not my surgery. Whew. Thank frigging' GOD.


What did I do next? I needed info still, right? Well of course I googled my doctor's name and the EXACT surgery name. Bingo- I found the Duke Handbook. It is for young patients that are having the free vascularized fibular graft. It had everything I needed to know to alleviate my anxiety: pre-op, post-op, pain, care, day of, days after, what I can and can't do, as well as a timeline. A TIMELINE. I was able to breathe again. I was able to think about April 12 without tearing up, without feeling like it was the beginning of the end. 


I may not be looking forward to April 12, but I am not afraid of the unknown anymore.

Date, Set, ...Go!

So the date has been set. The nurse emailed me to say April 12. The doctor has confirmed.  I wasn't sure how to feel. I was happy the date was set, no guessing, trying to plan, or obsessing about THE DATE.  I was also nervous the date had been set, as now there was no putting it off.

MBH let my BIL/tenant know the he will will have to leave a few days (preferably weeks if I have a say) before hand so that I can focus on controlling one aspect of this debacle - my new room downstairs.  You know, the one that is currently inhabited apby my BIL and hisncanine from the 7th ring of hell. So I have one thing to focus on and I have been at it all weekend.  Online shopping, finding sheets, finding a paint color, looking for accessories, asking for input. I have put in my calendar the day maid is coming, the day to paint, the day to pick up sheets. I am looking ahead for my daughter's birthday party. (A surgery is not going to affect her party. I can limp around, delegate, and online shop to prepare.) Then mother's day. 

Shockingly my coping strategy is scheduling anything I can possibly schedule (with a glass of wine in hand of course.) The only thing I have not prepared for, the actual surgery.  Of course I put the date in my calendar (color coded green for 'personal'), though I have no idea what to expect. And that scares the shit out of me.

Diagnosis and Disassociation

I am still wondering how and why this happened. A week ago, I am sitting in the 4th doctor's office in the last year. A specialist at USC nonetheless. Finally, I'm going to get some answers. Hopefully the answer I want. He walks in, all European-like. He asks me why I am there and how can I help you. Obviously he has not thought to even glance at my chart. "How old are you?" Wow. You don't even know? I notice he hasn't referenced my name yet either. I answer, but then I am almost annoyed he is shocked at my age, diagnosis, and the range of motion in my hips. After a quick assessment, five to ten minutes, he says "Revascularization."

I have obsessively (and compulsively) had researched enough in the last three months to know EXACTLY what this entails. Maybe I am numb? I knew that this might have been an option for treatment, but the first option? I irrationally hoped for "let's get you on crutches and re evaluate in 2 months." I know..pathetic. I look at My Better Half (aka My MBH) and wonder aloud why I am not hysterical or sad. I am ...Okay, which seems odd. The doctor gives us the option of watching a video of the procedure. His video. MBH thinks its a good idea since we drove all the way out. He's usually tries to get the most out of everything, so I am not surprised.

Two minutes into the video, where they show the MARKER where the incisions will be, I lose it. I start to shake, I can't watch, I avert my eyes,I disassociate, ...I cry. I peek at MBH who is staring at the video, concentrating like he is about to take the medical boards the next day. He also added his own soundtrack, "Gnarly! Wow! Fuck!" I walked out before it was over. I made a beeline to the exit when the doctor stops us. Now he is chatty? "Do you like the video?" Uh, no. Did I find it informative? Sure.

MBH said I ran away from the doctor while he was still talking to me, offering to do this surgery in 3-4 weeks! I threw out every excuse I had: I need to talk to my referring doctor, I need to talk to work, .....I need to leave on a mission trip and spread the word of Jesus Christ. MBH later told me that it looked like I was trying to show the doctor how great my hip was feeling by basically running down the hallway.

It took me four days to get past the denial and to realize I don't have a choice, to talk about it, to think about it, to be able to help others cope, and to start this blog to chronicle my journey (assuming one day I will want to look back at the hell I went through).

The silver lining: if it works, I'm good.Forever. I also get to redo the back room - my new bedroom during my recuperation. I get to catch up on all the crappy TV shows and movies I don't have usually have time for. The cons: ...Let's not focus on that now.

I am still waiting for a final date...April..sometime. Not sure which date I prefer. I have come to the realization I am NOT in control.