Recalculating, recalculating, recalculating....that is what Lola kept saying to us and we drove aimlessly around LA. Lola is the GPS that our friends let us borrow. Apparently, after a cross country drive she was tired and in no mood to help us. We arrived in LA Sunday night....a day before schedule. The drive was easy, or at least it was for me, until we came into LA. We missed one little exit...one little exit....and all hell broke loose. We pulled over and asked the GPS to get us back on track. It took us all around LA...we were suspicious about where it was telling us to go, but who are we to argue with Lola? Until she said, "recalculating" and we had not gone anywhere near close to the 1.7 mile she had told us to go before turning. She started recalculating like crazy, obviously just as lost as we were. Luckily, our handy i.phones have GPS (not as fancy as Lola) that saved the day. I put Lola to bed for some rest. Hopefully, she will be more cooperative the next time we need her.
The hotel is cute. It has a king bed and fold out sofa (for Tommie when she gets here) and kitchenette. There is also a fireplace and balcony...extra perks that don't make me want to go home any less. I want to recalculate this whole damn thing! I am already really missing the girlies. It seems like everything reminds us of them (yes, we are pathetic). I am trying to be a good sport and not be grumpy, but it is hard. Poor Mere is trying too. We are both trying but all we want to do is go home NOW!
We drove around LA today and saw Beverly Hills, Rodeo Drive, C.edars Sinai, and plenty of beautiful people. The weather is perfect and there are at least a thousand shops, restaurants, and other things to do on every corner. We saw an organic vegan restaurant. How cool is that? Everything is organic this and organic that....no W.almarts here. Of course the traffic is horrible and cancels out all the positives of having an organic vegan restaurant at your doorstep (no, I'm not vegan). We did find an awesome frozen yogurt place called y.ogurtland. I think LR needs a francise because it was SUPER yummy and cheap. I think we need to go there everyday!
We are staying in West Hollywood which is apparently home to mostly gay men. There are rainbow flags everywhere and cute, little, LA gay guys swarming everywhere you look. Our hotel has the "gay channel" but no HGTV or Food Network....they obviously don't care about the lesbians. WTF is the gay channel anyway? I think all the lesbians are in the suburbs, driving minivans, having kids, and watching my favorite channels (HGTV and the Food Network)....ahhh.....sounds so good.
Tomorrow I have 3 hours of MRIs. I know, my life is very glamorous.....please don't be to jealous!! I'm ready to get this party started so we can go home. In the meantime, we can watch one of the many DVDs that make up the hotel's DVD library. Here are our choices: Grumpier Old Men, Spiderman II, A River Runs Through It, Men in Black II, Volver, Beaches, and St. John in Exiles. On second thought, I think I'll just watch the gay channel.
Sunday, November 29, 2009
Friday, November 27, 2009
My Poor Little Sydney
Today was our first day on the road. We were up early (Mere earlier than me), showered, car loaded, and ready to go. The only thing left was to say goodbye to the girlies. Mere woke Layne up and I went into the bedroom and cuddled up next to Syd. I woke her up and said, "It is time for mommy and mama to leave." She groaned and buried her head in the pillow. I thought she was still waking up until Mere mouthed to me, "she is crying." Oh.....our poor little girl. All this time she has acted like us leaving is no big deal. Here we were worried about Layne and it was Syd that was crying. She was hanging on us and said, "I don't want you to go." She has never cried out of sadness....today was the first time. Before today she reserved her tears for pain or trying to get out of trouble. It was truly heartbreaking. It took every little part of me to leave her. I just wanted to call the whole thing off and stay in bed cuddled up next to my girlies. Layne was fine. As we pulled off, she was waving and smiling, perfectly happy in "nanny's" arms. Syd didn't come to the door. We just talked to her a little while ago and both girls ended up at a friend's house playing, eating ice cream, and having fun. My mom said she overheard Syd telling Layne not to put something in her mouth because she would "have to have surgery." Apparently, Layne said, "what is surgery?" Syd said, "An operation. Like what mommy is having. But don't worry because she won't be sick anymore when she gets home."
Mere did great today. We made it to Albuquerque by 8pm, amazing how easy car travel is without kids. I had a very comfortable bed in the back of the van and we have tons of supplies thanks to AWESOME friends. We received several care packages from friends with everything from gum to magazines to games to gift cards. We are so blessed. I will say that the sunset as you drive into New Mexico is beautiful. Some other things we saw (or Mere saw and told me to look at)....lots of windmills, cotton fields, 2 people with California plates, the "largest cross in the Western Hemisphere," and the dinosaur museum. We are going to have to come back to New Mexico so Syd can see the dino museum!
This whole thing is still so surreal. Thank you for Mere, my girls, and our wonderful friends and family.
Mere did great today. We made it to Albuquerque by 8pm, amazing how easy car travel is without kids. I had a very comfortable bed in the back of the van and we have tons of supplies thanks to AWESOME friends. We received several care packages from friends with everything from gum to magazines to games to gift cards. We are so blessed. I will say that the sunset as you drive into New Mexico is beautiful. Some other things we saw (or Mere saw and told me to look at)....lots of windmills, cotton fields, 2 people with California plates, the "largest cross in the Western Hemisphere," and the dinosaur museum. We are going to have to come back to New Mexico so Syd can see the dino museum!
This whole thing is still so surreal. Thank you for Mere, my girls, and our wonderful friends and family.
Thursday, November 26, 2009
Love Letters
I was realizing that through all this crazy leaky spine drama I completely forgot to post love letters to my girlies on their birthdays. Syd was 7 on Oct 31st and Layne was 3 on Nov 22! My beautiful, angel girls are growing up fast. Who knew that 2 little packages could bring so much joy? I love that we are a family of 4 "girlies," always so close and connected. I love that my girls love to play with each other.....I'm not looking forward to that changing but I know it probably will. I LOVE that Syd and Layne are so different in every way...night and day, 100%. They are my heart and soul, the reason why life is fun. What did we do before kids?
Sydney....my oldest...my goosey goose. You are so introspective and thoughtful. You love dinosaurs and history and science. You have wanted to be a paleontologist (I had to look up how to spell it) since you were 3 and I think you might actually do it. You are starting to really love reading and are whipping through chapter books at the speed of light. You are such a great big sister. You always look out for Layne. You have been such a great help the last few months, always willing to do anything with a smile. You still love riding horses and have started to excel in gymnastics. You are drop dead gorgeous and have been since the beginning. People have stopped us your entire life to tell us how beautiful you are and you don't even know it (which makes you even more beautiful). You are easy going with such a great heart....nothing really phases you (you must get that from mama). I can still remember the very first time I saw you, I knew you were my daughter, forever and ever. We are connected in a way that transcends everything and everyone. You are a great snuggle bug (space heater) who still keeps me warm all night. I love, love, love you. Happy birthday sweet girl (even if it is a little late). I am so excited to get to keep watching you grow into the amazing woman that you are destined to be!
Laynie Lu Lu.....my baby....my fire cracker. You light up every room with your sparkling eyes, big smile, and crazy curls. You remind us how important it is to live in the moment. You are spontaneous and outgoing and SO FULL OF LIFE. You are so smart and attuned to the world around you....even at 3, nothing gets past you. You love to read and dance and play. You have kept me grounded over the last few months. Reading to you and telling stories from the sofa have made me find joy in the middle of a crisis. The time we have had together over the last few months is priceless and I wouldn't trade it for anything. Everytime I look at you, it takes my breath away. You are stubborn and persistent and passionate (you must get that from me). You throw fits that are impressive! But, you love with just as much gusto. Kisses from you are like little angel kisses. When you smile, everything stops for a minute. You are a mama's girl that is for sure, but I still get my fair share of loving....I just have to work a little harder! Happy birthday Lu Lu. I'm so grateful to be along for the ride.
I love my girlies!!!!!
Sydney....my oldest...my goosey goose. You are so introspective and thoughtful. You love dinosaurs and history and science. You have wanted to be a paleontologist (I had to look up how to spell it) since you were 3 and I think you might actually do it. You are starting to really love reading and are whipping through chapter books at the speed of light. You are such a great big sister. You always look out for Layne. You have been such a great help the last few months, always willing to do anything with a smile. You still love riding horses and have started to excel in gymnastics. You are drop dead gorgeous and have been since the beginning. People have stopped us your entire life to tell us how beautiful you are and you don't even know it (which makes you even more beautiful). You are easy going with such a great heart....nothing really phases you (you must get that from mama). I can still remember the very first time I saw you, I knew you were my daughter, forever and ever. We are connected in a way that transcends everything and everyone. You are a great snuggle bug (space heater) who still keeps me warm all night. I love, love, love you. Happy birthday sweet girl (even if it is a little late). I am so excited to get to keep watching you grow into the amazing woman that you are destined to be!
Laynie Lu Lu.....my baby....my fire cracker. You light up every room with your sparkling eyes, big smile, and crazy curls. You remind us how important it is to live in the moment. You are spontaneous and outgoing and SO FULL OF LIFE. You are so smart and attuned to the world around you....even at 3, nothing gets past you. You love to read and dance and play. You have kept me grounded over the last few months. Reading to you and telling stories from the sofa have made me find joy in the middle of a crisis. The time we have had together over the last few months is priceless and I wouldn't trade it for anything. Everytime I look at you, it takes my breath away. You are stubborn and persistent and passionate (you must get that from me). You throw fits that are impressive! But, you love with just as much gusto. Kisses from you are like little angel kisses. When you smile, everything stops for a minute. You are a mama's girl that is for sure, but I still get my fair share of loving....I just have to work a little harder! Happy birthday Lu Lu. I'm so grateful to be along for the ride.
I love my girlies!!!!!
Wednesday, November 25, 2009
They Are Here!!!
Guess what came this morning? A brand new pair of freshly knitted socks. Oh yeah, baby! I have the best MIL ever....eat your hearts out...she is mine!!! When I found out I was having surgery I asked Mere to ask her mom for a new pair of socks for surgery. Less then a week later and they have arrived. I put them on (briefly) to take a pic but I won't wear them again until I get to LA and start all my tests/surgery. They will make me smile, keep me connected, and keep my family with me even when I am alone. A tall order for some socks but if you wore them, you would understand! They really are more than socks.
And...thank you to my SIL, Melissa...this was supposed to be her pair for Christmas. Trust me, giving up a pair of these suckers is a sacrifice.
Thank you! Thank you! Thank you!
Tuesday, November 24, 2009
Hurry Up and Wait
Ok people, this is torture. Traveling across the country to have major surgery....yes. Leaving the girls for at least 2 weeks...yes. WAITING to leave....yuck!!! Initially, I was spending days on the phone with insurance companies, hotels, hospitals, etc while Mere was putting together lists for my MIL and discussing picks/drop offs with friends. Now, we are done. The car has been tuned up, most of our Christmas shopping (for the girls) is done, I have had my preop appointment, we joined AAA, and we are READY. Now we are just waiting to leave. The days are spent somewhere between reality and a sense of total disbelief. Most of me wants to buckle myself to the sofa and refuse to leave. There are moments when things almost seem normal and in those times I really want to convince myself this is not happening. Anticipation is always the worst part, right?
My mom is coming to our house and cooking Thanksgiving. Obviously, she will need to spent the night Thursday night since we are leaving early Friday morning. So, our last night together will be Wed. I think we will play games or cuddle in bed with a family movie.
So, the schedule (for now)
This Friday: Mere and I hit the road. We are hoping to make it to New Mexico by Friday night. Mere thinks she can do it. I agree. But, I'll be the one on the air mattress in the back so I'm not going to be the decision maker. Anyone have any suggestions for audio books?
Sat-Sun: Continue driving with a plan to get into to LA Sunday night (we might actually make it by Sat night)
Monday: 4:30 pm MRI of the entire spine (supposed to take 3-4 hours). Guess it is a good thing I like the MRI machine (see previous posts)
Tuesday: 2pm appointment with Dr. S (neurosurgeon)
Wed: Check in at 9am for 11am CT myelogram. This is where they put dye in my spine and take pictures. I HATE these and Dr. VH will not be the man doing to sticks. I wish I could take him with me!
Tommie arrives Wed afternoon. She is a good friend of ours that is staying through Tuesday. I can only imagine what she is going to walk into. I'm sure that Mere and I will be buck-ass crazy by Wed afternoon and in need of distraction.
Thurs: Surgery (all day)
After surgery I will have 2-4 days (most likely 4) in the hospital then will be discharged to the hotel. I will have a follow up 1-2 days after discharge. Dr. S will let me know when we are safe to go home at the post op appointment. I don't know the finer details of the surgery and I won't until I actually see Dr. S. It doesn't matter. I don't have any other choices. This is it.
I will be blogging right up until surgery and I'm thinking Mere will blog while I'm in the hospital.
Some random things I don't want to forget:
My dad cried on the phone the other night. I have never heard/seen him cry. EVER. It just about put me over the edge. MY. Dad. Is. Crying....really?? We were talking about details. We all hope that all goes well and I come back healthy. But, not planning for the worst doesn't make it not happen. You can't ignore the possibilities. He was asking me if I had a will and life insurance and plans. Yes, I have a will and yes I have life insurance and yes I have a Power of Attorney and Health Care Proxy (Mere). I was telling him (my mom already knows this) that everything goes to Mere and she is to make ALL medical decisions. Period. We have all the legal documents to back up these decisions. He started to say something and then silence. I thought he dropped the phone and then I realized he was crying. I spent the next few minutes saying, "I'm going to be fine. I'm young. I'm healthy. He is the best. Nothing is going to happen to me. I promise. I will be fine." My poor dad.....I felt terrible. It must be awful to be so far away when your child is going through a health crisis. At least my mom is going to be here with the girls...she will be busy and won't be able to spend a whole lot of time thinking about me. But, there is just not much he can do right now. I promised him that Mere will call him (right after my mom) on the surgery day every time she gets an update and that I would call him as soon as possible.
I had to go to U.AMS for a preop appointment yesterday. Before the appointment I ran up to the Heme/Onc department (where I work) to sign some papers and say hi to one of my close friends. It was strange to be there. It felt like a WORLD away from where I am right now. Who cares about call schedules and presentations? Man....I wish I was there!!
When I get back to 100% Mere and I are getting married. We are getting in the car, heading to Iowa, and getting married. I know it is not legal here and we have been "married" for a long time....since our Civil Union in Vermont. But, I want to do it.
It pays to have friends who love electronics. One friend is letting us take her K.indle, G.PS, i.pod (between her and her wife they have 3), and n.intendo DS (so Mere can play games). Talk about friends in high places!!!
I'm getting a new pair of socks. For those of you who don't know....my MIL makes the most AWESOME knit socks. I mean, they are like one of my favorite things ever. I asked Mere to ask her to knit me a pair for surgery. I think major spine surgery is a good reason for new socks. I know, I'm shameless....what can I say? They are really great socks.
Mere has been making lists like crazy. She is trying so hard to keep it as normal for the girls as possible. The truth is....it is not normal. My mom will not do things the way we do. It will be different. But, that is ok. The girls will be taken care of, loved, clothed, fed, etc....the rest is gravy. I think she is most worried that my mom will mess up the pick up/parking line at their school!
Layne is having a lot of accidents. She has been completely potty trained for awhile with rare accidents. Over the last week, she has been having at least one/day. I think she is a little messed up right now. She woke up last night and told Mere that the monsters were going to get her. I wish we could take her with us. She is so sensitive and little and attached. She might say, "you know, I'm a big girl now" but she is still our little baby.
I'm glad KJ is back. If you don't know her then check out http://www.roleplayingwithkids.blogspot.com
My mom is coming to our house and cooking Thanksgiving. Obviously, she will need to spent the night Thursday night since we are leaving early Friday morning. So, our last night together will be Wed. I think we will play games or cuddle in bed with a family movie.
So, the schedule (for now)
This Friday: Mere and I hit the road. We are hoping to make it to New Mexico by Friday night. Mere thinks she can do it. I agree. But, I'll be the one on the air mattress in the back so I'm not going to be the decision maker. Anyone have any suggestions for audio books?
Sat-Sun: Continue driving with a plan to get into to LA Sunday night (we might actually make it by Sat night)
Monday: 4:30 pm MRI of the entire spine (supposed to take 3-4 hours). Guess it is a good thing I like the MRI machine (see previous posts)
Tuesday: 2pm appointment with Dr. S (neurosurgeon)
Wed: Check in at 9am for 11am CT myelogram. This is where they put dye in my spine and take pictures. I HATE these and Dr. VH will not be the man doing to sticks. I wish I could take him with me!
Tommie arrives Wed afternoon. She is a good friend of ours that is staying through Tuesday. I can only imagine what she is going to walk into. I'm sure that Mere and I will be buck-ass crazy by Wed afternoon and in need of distraction.
Thurs: Surgery (all day)
After surgery I will have 2-4 days (most likely 4) in the hospital then will be discharged to the hotel. I will have a follow up 1-2 days after discharge. Dr. S will let me know when we are safe to go home at the post op appointment. I don't know the finer details of the surgery and I won't until I actually see Dr. S. It doesn't matter. I don't have any other choices. This is it.
I will be blogging right up until surgery and I'm thinking Mere will blog while I'm in the hospital.
Some random things I don't want to forget:
My dad cried on the phone the other night. I have never heard/seen him cry. EVER. It just about put me over the edge. MY. Dad. Is. Crying....really?? We were talking about details. We all hope that all goes well and I come back healthy. But, not planning for the worst doesn't make it not happen. You can't ignore the possibilities. He was asking me if I had a will and life insurance and plans. Yes, I have a will and yes I have life insurance and yes I have a Power of Attorney and Health Care Proxy (Mere). I was telling him (my mom already knows this) that everything goes to Mere and she is to make ALL medical decisions. Period. We have all the legal documents to back up these decisions. He started to say something and then silence. I thought he dropped the phone and then I realized he was crying. I spent the next few minutes saying, "I'm going to be fine. I'm young. I'm healthy. He is the best. Nothing is going to happen to me. I promise. I will be fine." My poor dad.....I felt terrible. It must be awful to be so far away when your child is going through a health crisis. At least my mom is going to be here with the girls...she will be busy and won't be able to spend a whole lot of time thinking about me. But, there is just not much he can do right now. I promised him that Mere will call him (right after my mom) on the surgery day every time she gets an update and that I would call him as soon as possible.
I had to go to U.AMS for a preop appointment yesterday. Before the appointment I ran up to the Heme/Onc department (where I work) to sign some papers and say hi to one of my close friends. It was strange to be there. It felt like a WORLD away from where I am right now. Who cares about call schedules and presentations? Man....I wish I was there!!
When I get back to 100% Mere and I are getting married. We are getting in the car, heading to Iowa, and getting married. I know it is not legal here and we have been "married" for a long time....since our Civil Union in Vermont. But, I want to do it.
It pays to have friends who love electronics. One friend is letting us take her K.indle, G.PS, i.pod (between her and her wife they have 3), and n.intendo DS (so Mere can play games). Talk about friends in high places!!!
I'm getting a new pair of socks. For those of you who don't know....my MIL makes the most AWESOME knit socks. I mean, they are like one of my favorite things ever. I asked Mere to ask her to knit me a pair for surgery. I think major spine surgery is a good reason for new socks. I know, I'm shameless....what can I say? They are really great socks.
Mere has been making lists like crazy. She is trying so hard to keep it as normal for the girls as possible. The truth is....it is not normal. My mom will not do things the way we do. It will be different. But, that is ok. The girls will be taken care of, loved, clothed, fed, etc....the rest is gravy. I think she is most worried that my mom will mess up the pick up/parking line at their school!
Layne is having a lot of accidents. She has been completely potty trained for awhile with rare accidents. Over the last week, she has been having at least one/day. I think she is a little messed up right now. She woke up last night and told Mere that the monsters were going to get her. I wish we could take her with us. She is so sensitive and little and attached. She might say, "you know, I'm a big girl now" but she is still our little baby.
I'm glad KJ is back. If you don't know her then check out http://www.roleplayingwithkids.blogspot.com
Thursday, November 19, 2009
Where the Beautiful People Are
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...............
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...............
Sunday, November 15, 2009
I REALLY did study
I have taken so many tests in my life and have studied for 99.9% of them. I have no idea how much of my life I have spent studying for tests, but I'm sure that if all added up, it would be a crazy, unbelievable number. In college, there were often week long study sessions and med school was 2 years of constant studying (the last 2 years was clinical rotations). I remember all of favorite spots. The smoking lounge in my freshman dorm or at my standard issue wooden desk overlooking the alley in the tiny apartment I shared with my sophomore roommate. The kitchen table in the 5 bedroom house I shared with LOTs of people my junior year. My favorite room at the U.AMS library, in the office of our first home before it was converted to a nursery, and then on a folding table in our bedroom. I have missed so many things to study that I couldn't even begin to measure it all. On more than one occasion, I felt like life was just passing me by while I sat glued to a chair and a book. But, somehow I always had one more hour in me. I was always able to rally and get through the next round of exams. I have even managed to make it through all of the really big tests...the MCA.T, the S.tep exams, and the In.ternal Medicine Boards. I always had a choice, I was studying because I wanted to a doctor, pass the boards, get to the next step. The goal was always clear and loud and worth it.
I took a test this weekend and I didn't pass it. I have been preparing for this test 24/7 for the last 7 weeks. Life has DEFINATELY been passing me while I have studied. I haven't cheated or looked for an easy way out...I have just done the deal. I got up (with doctor's permission) on Saturday...nothing major, just sat up and moved around the house. The headaches were at bay for about 3 hours but I didn't have to lay down until about 6 hrs into the day. Today we got up and I went to church with the family!!!! As we sat through the sermon, I knew they were back. The tugging at the back of my neck, the nausea, ears popping, and "drunk" feeling are all pretty familiar. But, still the headache was not overwhelming...just there. We ran by Krog.er (which is sensory overload when you have been cooped up so long) and came home. I still stayed up for another hour or so, helping make lunch and feeling like a normal part of the family for a few minutes. It was amazing to feel that way, to be up and out with the kids, to notice Syd's brow relax a little, and hold Layne's hand while we crossed the street. Finally, I gave in a went back to the sofa. The thing that really sucks is that now it REALLY hurts. This is not over, it is not fixed.
Obviously, there will be more tests this week. The kind you can't study for, the kind that involve needles, and machines, and dye in your spinal column. The kind you don't get sedated for and have yet to produce "good" news. I am tired of being a "good sport." I am tired of not knowing. I am tired of living on blind faith. I am just tired.
Yesterday, Syd was telling me about something that had happened and she said, "it was before you got sick." Layne wanted Mere to buy me a pillow at Target the other day. My girls are starting to see me as someone who is sick. Not the person who is going to take care of them but the person they are taking care of now.
I'm really tired and emotional and I want to suck right now. So I am wrapping up this pity party and going to bed.
I took a test this weekend and I didn't pass it. I have been preparing for this test 24/7 for the last 7 weeks. Life has DEFINATELY been passing me while I have studied. I haven't cheated or looked for an easy way out...I have just done the deal. I got up (with doctor's permission) on Saturday...nothing major, just sat up and moved around the house. The headaches were at bay for about 3 hours but I didn't have to lay down until about 6 hrs into the day. Today we got up and I went to church with the family!!!! As we sat through the sermon, I knew they were back. The tugging at the back of my neck, the nausea, ears popping, and "drunk" feeling are all pretty familiar. But, still the headache was not overwhelming...just there. We ran by Krog.er (which is sensory overload when you have been cooped up so long) and came home. I still stayed up for another hour or so, helping make lunch and feeling like a normal part of the family for a few minutes. It was amazing to feel that way, to be up and out with the kids, to notice Syd's brow relax a little, and hold Layne's hand while we crossed the street. Finally, I gave in a went back to the sofa. The thing that really sucks is that now it REALLY hurts. This is not over, it is not fixed.
Obviously, there will be more tests this week. The kind you can't study for, the kind that involve needles, and machines, and dye in your spinal column. The kind you don't get sedated for and have yet to produce "good" news. I am tired of being a "good sport." I am tired of not knowing. I am tired of living on blind faith. I am just tired.
Yesterday, Syd was telling me about something that had happened and she said, "it was before you got sick." Layne wanted Mere to buy me a pillow at Target the other day. My girls are starting to see me as someone who is sick. Not the person who is going to take care of them but the person they are taking care of now.
I'm really tired and emotional and I want to suck right now. So I am wrapping up this pity party and going to bed.
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