I'm not really sure how to start this post. We finally have answers and a plan. I'm just don't think I can transfer my fear and anxiety to the page enough to really convey where I am right now. I can usually get rid of some yuckiness here but the yuckiness is really clinging to me today.
First, I'm listening to Black Ey.ed Peas Meet M.e Halfway and loving this song. So, go to itu.nes and get it. "I can't go any further than this.." I don't think it is supposed to make you cry it is more of a dancing song......
This week has brought more questions from the crew at U.AMS. There have been a few plans, none of them have been viable. In the end, the doctors here are dropping like flies. I understand they are frustrated and unsure about what to do next. I have been there. That is when you look for another doctor to take your patient. Feels really shitty when you are the patient. It makes you feel abandoned and hopeless. PLEASE, PLEASE, PLEASE I don't ever want to make someone feel this way. I'm not even sure if I can do the doctor thing after all of this, striking a balance might be impossible. Anyway, I digress. We were waiting, waiting, waiting.
The only disclaimer to the above statements about doctors, is Dr. VH. Seriously, if we ever get pregnant and have a boy, we are naming that kid Rudy (Dr. VH's first name). There are no words to describe what he has been to me through this. Every time I try to thank him, I start crying. A radiologist has taught me to be the kind of doctor that I always wanted to be. He is incredible.
The call came last night (I know they are 2 hrs behind but those LA peeps were working late) from Dr. S's assistant. "Dr. S have reviewed your films and would like to invite you to LA for an appointment." I've been INVITED to the party! At least someone wants me! She proceeded to answer questions and discuss the schedule of events. It didn't take long for me to realize that I'm just one of many that they see like me. There is a protocol for people like me....AWESOME! They aren't thinking about how they are going to treat me, they know how they are going to treat me. This woman's job is to coordinate out of town patients with this disease coming to C.edars Si.nai. She was super nice, calling me Dr. Joheim and being uber careful not to interrupt me. A few times we both started to speak at the same time and she would immediately say, "I'm sorry doctor, you go ahead."
"Uhmm, no YOU go ahead." I felt like I was buying a BMW, not discussing my medical care. Bottom line, she acted like they wanted my business (am I making sense?). Instead of you have NO power or say or anything...we are just doing the best that we can, I got a feeling that they WANTED to take care of me.
Here is part of the conversation.
Her: "We want to you to come on Sunday. Monday will be a MRI complete spine with myelography. That is will take around 3-4 hours. Tuesday will be a CT entire spine with myelography and appt with Dr. S. On Wed or Thurs you will have a surgery."
Me: "Surgery?" This is the part where I quit breathing for just a minute. I knew surgery was probably coming (he is a neurosurgeron) but when she said it I was STILL suprised. Now I know why sometimes you have to tell people their prognosis over and over again. Seriously, I have told you the plan and prognosis 10 times, how can you not know? Here is a newsflash...you can't HEAR it! When it is you, your brain plays tricks on you. It is like the movies where everything is slow motion and you are not there. So that is why you have to repeat yourself time and time again. Was I really that bad of a doctor?
Her: "Yes. A thoracic laminectomy with repair of CSF leaks. You will be in the hospital for 2-4 days. At least some, if not all of that time will be in the ICU. You will need to stay in LA for about a week after the surgery so you can come back for post op follow up."
Me: "What is the success rate, mortality rate, morbidity rate, complications?"
Her: "Dr. S will answer all those questions when he calls you tomorrow (I haven't heard from him yet so don't ask)"
Me: "So my surgery might be on Thanksgiving?"
Her: "Yes, it will probably be on Thanksgiving. Dr. S doesn't take off for holidays."
Me: "Are you fully staffed on Thanksgiving? What about getting all these tests scheduled on a holiday week at the last minute? Won't there be a lot of delays and overbooks?"
Her: "Actually, yes. Most of our staff will be off and it would be a lot better for you to come the following week. I understand there was a delay in us getting back to you (there was??) so Dr. S wanted us to get you in immediately. But if you are willing to wait until Nov 30th that would really be much better."
Me: "Yes. I will wait until Nov 30th."
I want to get this show on the road but I'm not crazy. When I am in the OR with my SPINE exposed I don't want ANYONE thinking about getting home to see their family for Thanksgiving. There is an attitude shift in hospitals over the holidays that does effect patient care. I will argue that point with anyone. It just is. I know. So Dr. S might be 100% there but I highly doubt that everyone around him will be. You know what? I'm glad neurosurgeons make millions of dollars. They should. This is my spine. I am 31. MY spine. I hope Ob.ama doesn't f^&k that up.
We finished up our very long conversation and got off the phone to start planning with Mere. When I said surgery, Mere looked like I punched her in the stomach. I think she would have been a lot happier if I had punched her in the stomach. She is a rock. I KNOW this is harder on her than it is on me. I would much rather go through this then watch her go through it. We are both kind of walking around like deer in the headlights right now. At some point you start to get a little numb, not numb enough. There are a thousand things to do between now and then. My mom is taking the girls. I hate to be away from them so long, especially around the holidays. They have kept us both grounded....what will we do without them? Sometimes I think the only reason the days go on is because of Layne's smile and Syd's funny stories. They have never been away from both of us longer than a few days. I can't even think about it. It hurts my heart.
"God, I offer myself to Thee--to build with me and to do with me as Thou wilt. Relieve me of the bondage of self, that I may better do Thy will. Take away my difficulties, that victory over them may bear witness to those I would help of Thy Power, Thy Love, and Thy Way of life. May I do Thy will always!" I think...............