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.
Wednesday, November 11, 2009
Keep on patching!!
Since the last blood patch things have been better. I get longer periods of time being up without pain. What I really want to do it push it as far as I can and see how bad the headache gets. Unfortunately, my doctors (and Mere) keep reminding me that is not good for healing. It is getting harder and harder to tell if the headache is spinal or secondary to the blood patch. After talking to Dr. VH I found out this is good. The blood that they put in my neck is an irritant and my spinal cord should be compressed (just a little) which will cause some pain. Hopefully, this means the dura is healing. The overall idea is that the blood clot irritates the dura and encourages healing. The result is that I have mild headaches and neck pain most of the time, making it harder to interpret what is really happening!! The big picture: I feel better since the last patch and am really hopeful. This time last week things were looking so much yuckier.
The good news is that we have a plan (more on that in a minute) and I feel better. The bad news is that I'm still on bed rest and driving is still off limits. Now for the plan:
--Tomorrow morning I'm getting another cervical blood patch, this time they are going to aim towards the left side. It will be followed by 24 hours of not flexing my neck and staying in bed except for bathroom breaks. Then some more bed rest like what I'm used to (showering, getting up for little bits of time, etc) for a week.
--If the next blood patch doesn't work, then another myelogram to assess the anterior tears (the tears are anterior and posterior). That will be followed by some anterior blood patches where they actually go through my spinal column to get to the anterior position. I have to admit that sounds a little scary but not as scary as surgery.
--If that does not work, then we do fibrin glue injections. We are all still not 100% sure how this will work. We are hoping that the surgeon in LA will do some consultations over the phone.
--If after all of the above the headaches aren't better, then they are going to shoot me. Seriously, at this point we will go to LA for surgery.
Regardless of where I am, I am hoping to go back to work in December on very light duty. Truthfully, I'm hoping this patch works and I can go back to full duty in December. Right now the question is can I take a Thanksgiving call at the VA? Dr. VH's initial reaction was probably not. But, then I explained that it is only rounding (2-3 hrs or so) and no beeper call at night or after I leave the hospital so I could come home and rest all day. He wants me to wait and see how this patch works and reassess on Monday but even if I'm not 100% better he is not ruling out the possibility of letting me test drive my patches over Thanksgiving, Am I excited about the potential of being on call? YES. Does that make me question my sanity? Hell, yes.
Things I'm going to do when I get better:
--Go back to work. I miss working. Weird.
--Get more patients recruited for my study (I was procrastinating on this before I got leaky)
--Dance more. I even have this delusional idea of maybe taking a ballroom dancing class. I'm thinking that will pass when D.ancing with the Stars is done.
--Ride bikes with the family (even if it is to cold)
--Run (if I can). If not, then spin!
--Moonlight less (this one will be hard) so I can give some time to the free clinic that I have been credentialed at for a year but have yet to work one shift.
--Go grocery shopping. Mere said that most the of K.rogers they have been remodeling are done. I'm not sure why I'm excited to see the remodels but I am.
--Cook. Anything.
--Go to a game and watch Syd cheer!!
--DRIVE. By myself. Windows down, radio up.
--Get a little more involved in our church. Maybe go back to doing some volunteering at community breakfast. This ties into the whole moonlight less idea.
--Did I mention dancing?
The good news is that we have a plan (more on that in a minute) and I feel better. The bad news is that I'm still on bed rest and driving is still off limits. Now for the plan:
--Tomorrow morning I'm getting another cervical blood patch, this time they are going to aim towards the left side. It will be followed by 24 hours of not flexing my neck and staying in bed except for bathroom breaks. Then some more bed rest like what I'm used to (showering, getting up for little bits of time, etc) for a week.
--If the next blood patch doesn't work, then another myelogram to assess the anterior tears (the tears are anterior and posterior). That will be followed by some anterior blood patches where they actually go through my spinal column to get to the anterior position. I have to admit that sounds a little scary but not as scary as surgery.
--If that does not work, then we do fibrin glue injections. We are all still not 100% sure how this will work. We are hoping that the surgeon in LA will do some consultations over the phone.
--If after all of the above the headaches aren't better, then they are going to shoot me. Seriously, at this point we will go to LA for surgery.
Regardless of where I am, I am hoping to go back to work in December on very light duty. Truthfully, I'm hoping this patch works and I can go back to full duty in December. Right now the question is can I take a Thanksgiving call at the VA? Dr. VH's initial reaction was probably not. But, then I explained that it is only rounding (2-3 hrs or so) and no beeper call at night or after I leave the hospital so I could come home and rest all day. He wants me to wait and see how this patch works and reassess on Monday but even if I'm not 100% better he is not ruling out the possibility of letting me test drive my patches over Thanksgiving, Am I excited about the potential of being on call? YES. Does that make me question my sanity? Hell, yes.
Things I'm going to do when I get better:
--Go back to work. I miss working. Weird.
--Get more patients recruited for my study (I was procrastinating on this before I got leaky)
--Dance more. I even have this delusional idea of maybe taking a ballroom dancing class. I'm thinking that will pass when D.ancing with the Stars is done.
--Ride bikes with the family (even if it is to cold)
--Run (if I can). If not, then spin!
--Moonlight less (this one will be hard) so I can give some time to the free clinic that I have been credentialed at for a year but have yet to work one shift.
--Go grocery shopping. Mere said that most the of K.rogers they have been remodeling are done. I'm not sure why I'm excited to see the remodels but I am.
--Cook. Anything.
--Go to a game and watch Syd cheer!!
--DRIVE. By myself. Windows down, radio up.
--Get a little more involved in our church. Maybe go back to doing some volunteering at community breakfast. This ties into the whole moonlight less idea.
--Did I mention dancing?
Saturday, November 7, 2009
And, you are?
This update will be brief because I am laying flat with a neck brace which doesn't make for the easiest typing. This time around I really am 100% confined to the bed for 24-48 hours. Mere has been great, she is constantly checking on me and being super sweet. The girls are popping there heads in occasionally but are mostly keeping themselves entertained. Every time the come near me, Mere says, "be careful, be gentle, be still." I think poor Layne is afraid to move around me. Yesterday I had terrible nausea but today I feel much better.
We checked in yesterday at 7am ready to go. After some confusion (which is now expected) they got me settled into a room. The nurse was so sweet. It took her awhile to get an IV and she was obviously stressed out about it. At this point in the game, IV sticks are nothing. She eventually got it and they started to fluids. We also had to go through the whole are you pregnant stuff. No, I am not. How do I know? I'm a lesbian. Yes, I will sign a waiver. I'm not complaining everyone is just doing their job. It is like the movie Groundhog Day, the same conversations every time. In the middle of all the preparations a resident walked into the room. She didn't look at me (or Mere or the nurse), she didn't say who she was with, she just walked over to my chart and grabbed a sticker. Then she said something about marking me. That's when I said, "who are you with?" "I'm with vascular surgery." Oops! I think you are in the wrong room. Through this whole interaction she still never looked at me. I know she was busy checking off things to do in her head, taking time to pay attention to her surroundings was not important.
A few minutes later one of the interventional neuroradiology nurses came to get me. I can't remember his name but he was really cute. He took me back to the previously mentioned scary room with LOTS of equipment. It wasn't so scary this time. They got me on the table (face down) with my gown wide open in the back. It was FREEZING in the room. The heart monitor kept showing V tach (a bad rhythm that results in people getting shocked) because I was shivering. I made the nurse promise not to shock me! While I was on the table, multiple people came in to talk to me. Some of them I had seen before and others I didn't recognize. NONE of them introduced themselves. The doctoring lesson for the day: ALWAYS introduce yourself and say who you are with. This is basic 1st year medical school stuff that I have NOT done a million times. You get busy and in your head and you just forget. Who knew it was so important?
Dr. E (the interventional neuroradiologist who is HANDSOME) came in the room and started draping me. The drape was over my head but I didn't care......I had fentanyl and versed on board....bring it! The procedure went well. Sedation helps so much. After a brief time in recovery I was released home. I spent the day half awake in bed trying not to vomit. Dr. VH (my person hero) called later in the day. He told me that the procedure went well and he felt really optimistic. He thinks I might have to have a few more blood patches and will continue bed rest for awhile. BUT, he was hopeful. Yeah!!!!!!
I won't know if it worked until I can get up for awhile. I'm told I get to shower tomorrow so that will be a test drive. Thanks for all the prayers, kind words, and awesome vibes.
We checked in yesterday at 7am ready to go. After some confusion (which is now expected) they got me settled into a room. The nurse was so sweet. It took her awhile to get an IV and she was obviously stressed out about it. At this point in the game, IV sticks are nothing. She eventually got it and they started to fluids. We also had to go through the whole are you pregnant stuff. No, I am not. How do I know? I'm a lesbian. Yes, I will sign a waiver. I'm not complaining everyone is just doing their job. It is like the movie Groundhog Day, the same conversations every time. In the middle of all the preparations a resident walked into the room. She didn't look at me (or Mere or the nurse), she didn't say who she was with, she just walked over to my chart and grabbed a sticker. Then she said something about marking me. That's when I said, "who are you with?" "I'm with vascular surgery." Oops! I think you are in the wrong room. Through this whole interaction she still never looked at me. I know she was busy checking off things to do in her head, taking time to pay attention to her surroundings was not important.
A few minutes later one of the interventional neuroradiology nurses came to get me. I can't remember his name but he was really cute. He took me back to the previously mentioned scary room with LOTS of equipment. It wasn't so scary this time. They got me on the table (face down) with my gown wide open in the back. It was FREEZING in the room. The heart monitor kept showing V tach (a bad rhythm that results in people getting shocked) because I was shivering. I made the nurse promise not to shock me! While I was on the table, multiple people came in to talk to me. Some of them I had seen before and others I didn't recognize. NONE of them introduced themselves. The doctoring lesson for the day: ALWAYS introduce yourself and say who you are with. This is basic 1st year medical school stuff that I have NOT done a million times. You get busy and in your head and you just forget. Who knew it was so important?
Dr. E (the interventional neuroradiologist who is HANDSOME) came in the room and started draping me. The drape was over my head but I didn't care......I had fentanyl and versed on board....bring it! The procedure went well. Sedation helps so much. After a brief time in recovery I was released home. I spent the day half awake in bed trying not to vomit. Dr. VH (my person hero) called later in the day. He told me that the procedure went well and he felt really optimistic. He thinks I might have to have a few more blood patches and will continue bed rest for awhile. BUT, he was hopeful. Yeah!!!!!!
I won't know if it worked until I can get up for awhile. I'm told I get to shower tomorrow so that will be a test drive. Thanks for all the prayers, kind words, and awesome vibes.
Thursday, November 5, 2009
Update (a LONG one)
As I write this update I am alone on the sofa, listening to Michael Jackson, and feeling kinda good. That could change in a minute...who knows? But right now I am peaceful and hopeful. At least for the next few hours I'm untouchable (or at least that is what I tell myself). Before she left, Mere said, "put an update on your blog and put it ALL there so we won't forget this." Hmmm. Hefty assignment. The last few weeks (and especially days) have been a roller coaster filled with fear, love, gratitude, more fear, and more faith than I thought possible. I have become raw and tearful. I cry all the time now....happy, sad, scared, grateful...it doesn't matter they are all met with tears. I never know when I'm going to spring a leak (pun intended).
God, I love Michael Jackson.....I'm going to do so much dancing when this is over!!!
So, the last blood patch didn't do anything. No help at all. The MRI wasn't particularly helpful. On Oct 29th my vacation/sick time ran out and as a fellow we don't have short term disability. Things were looking grim. Mere and I were fighting, mostly because I was attempting to make everyone around me as miserable as I had become. Thankfully, a friend told me to quit feeling sorry for myself and start looking for solutions. Up to this point I just kept thinking that my doctors would figure this out and that the end was just around the corner. I didn't want to be one of those crazy, internet obsessed patients who always thinks that go.ogle is the answer to everything. I ended up on Pub.Med doing searches for intracranial hypotension. I scanned all of the publications for the name that appeared the most. There were 2, a neurosurgeon at Ced.ars S.inai in LA and a neurologist at the M.ayo Clinic in Minnesota. I found a message board with a lot of people who had great things to say about Dr. S in LA. Sunday night I emailed Dr. S and I drafted and email to my team of doctors at U.AMS (my primary care doctor, the anethesiologist, the neuroradiologist, and the neurologist) asking them to all sit down together, discuss my case, and come up with a plan. By 1pm the next day, Dr. S's nurse at Ced.ars S.inai called me and told me what information they needed and how to get it to him. Dr. S had also responded to my personal email and mentioned doing a subtraction myelogram (something no one here had done or mentioned). I called Dr. VH (neuroradiologist) and asked him about the subtraction myelogram. Being the awesome doctor that he is, he started to investigate the possibility immediately. They weren't done at U.AMS but he thought he might be able to do it. He also told me that everyone was meeting the next day to discuss my case.
By 2pm the next day my PCP (and good friend) called to tell me the results of the meeting that all my doctors had earlier that morning. The news was mixed. I could hear the fear and hesitation in her voice. I guess that is the only downside of being good friends with your doctor. She said, "I'm going to level with you." Uhmmm....OK. The key was still in localizing the leak. Dr. VH had devised a plan to do a subtraction myelogram the following morning. The main issue with the subtraction myelogram is that it only visualizes the cervical spine. If it was positive, then we would have some direction, but a negative test would still leave us with more questions then answers. She said, "if the leak is cervical we can try one more blood patch, then surgery. The surgery would be no walk in the park, but it is do-able. We will have to discuss it with the neurosurgeon at U.AMS but they can probably do it here. If you want to go to LA, then we will refer you there and you can have it there. Whatever you want." OK. Then the bomb. She said, "if the leak is thoracic, then this is major. The surgery has a 20-30% mortality rate, the recovery is long, and it can't be done here. They will have to collapse your lungs, you will be in intensive care for a few days, and you might not survive it. It is a big deal. Jessica, listen to me. You have to stay strong, healthy, and together. You have to sleep. You have to eat healthy. I'm going to be with you through this but you cannot fall apart, you just can't. You can't get depressed. You have to be strong. You can't get depressed. We need to keep your immune system in check. I will be with you every step of the way." We talked for a few more minutes and I was given instructions on where to be the next day for the subtraction myelogram.
Thankfully, Mere and T (a very close friend and advisor) were here when she called. I don't entirely remember the conversation that followed. Needless to say, we were all in shock (at least I was). I wanted to disappear, which is what I always want to do in times of stress. I just wanted to crawl in a hole and go into complete shutdown mode. I wanted to drink (a lot), take as many pills as I could find, and sleep for as long as I could. We didn't sign up for this. When this started I was just worried about the financial implications of being out of commission for a month. Now we were talking major surgery in another city with a high mortality rate. What!!!???? About a hour later, the neurologist called. He went on to tell me that if I was his daughter he would try to do everything to avoid surgery if the tear was thoracic. One option (he said) was to put a shunt in my back and drain the CSF (to give the dura time to heal) while I was on 100% complete bed rest (like foley catheter, sponge bath kind of bed rest). Of course, I would need heavy painkillers because the low pressure caused by the CSF shunt would be very painful. Oh yeah, the bed rest could be several months in duration. Talk about options! Risky surgery vs painful, strict bed rest. I'm thinking after a few weeks of that kind of bed rest I would be ready to take a gun to my head, if Mere didn't beat me to it! Ughhh! That was a long day (night). That night there were some very tender moments with Mere and T that will forever be etched in my heart. It is rare to get to a place where there are ZERO walls between people and I'm not sure I've had ever been there before that night. It makes you feel scared and naked and raw. But, I also felt so safe and loved. I have never asked anyone to pray with me, that night I did. I wanted to disappear, but the people I love wouldn't let me. They kept me here, grounded, and grateful.
The next morning we were up bright and early at U.AMS. I walked into the room (my first time in THIS procedure room) and there were huge machines everywhere. Of course, I started crying immediately because that is what I do now. Not to mention there were at least 20 people in the room (a lot of them doctors) and nervous energy. You never want to be the patient that doctors from the entire department come to see. You don't want to be the recipient of a novel technique or "cool" new therapy. These are not the ways in which one wants to get attention. Dr. VH walked into the room and a huge wave of relief washed over me. I'm telling you, when this is over I am going to do something so special for him (if you have any great ideas, let me know). Dr. VH put me in a totally crazy position on the table (face down, neck flexed, arms up) and injected dye into my spinal cord (at the level of my neck just below my ear). Then machines were circling around me for about 20 minutes. Then I was allowed to roll over on my back and "relax" while they all looked at the images. What do you think I did? Yep, just cried and cried. I wasn't in any pain. Actually, the neck stick was WAY better then being stuck in the back which I would have NEVER believed. One of the residents walked over and I asked, "did you find it?" She said, "I think so, but don't get excited yet." A few minutes later, Dr. VH came over and said that he felt like it was in C6/C7/T1/T2 but that he would need at least a day to reconstruct all the images to be sure.
They released me home back to my couch to wait. In the meantime, Dr. S's nurse from LA called to let me know they had received my films (I am still waiting to hear more from him). I got a call about 1pm today from Dr. VH that he felt pretty certain we were looking at multiple tears in C6/C7/T1, anterior and posterior. He has talked to the interventional neuroradiologist and the plan is for an anterior cervical blood patch. So, at 7am tomorrow I get a new procedure and a new doctor. This time I will be sedated (there is always something to be grateful for). Dr. VH is collecting all of the images from the subtraction myelogram so we can get them to LA ASAP.
I am learning that asking about the next step rarely produces concrete answers. If this doesn't work (and it will take a few days to know if it will work), then we will likely end up in LA. But, NOTHING is set in stone right now. I don't know what is coming next. When you think about it, none of us really knows....we just think we do.
There are so many things I am learning. I know that we have the best friends/family in the world (yes, I'm sure you do to). We have had meals here every night this week, the phone is always ringing, and the girls have a wealth of places to go while we are at the hospital. The most amazing thing? We don't even have to ask. It's just done. It just is.
Mere and I are closer by the minute. I have always known she is my soulmate but her strength and beauty through all of this makes me fall in love with her over and over and over again. We have held each other, cried, laughed, screamed, and everything in between. The point is that we are always safe with each other. At the end of the day, she is who I want when I wake up and there has been a lot of waking up over the last year. When she is here, it is ok. No one deserves what we have, we are just so lucky.
I am so grateful for my girls. They just make it all good. How bad can a day really be when Laynie smiles at you? Just before this happened Syd had started sleeping in her own bed. Suprise! She is back in our bed. She sleeps curled up next to me all night and keeps me warm and happy. There is no other place I would rather be. Layne is always asking me if I feel better. We have had time together that we never would have had. Hours on the sofa reading books and telling stories.
I've never thought of myself as a very spiritual or religious person but that is changing fast. I pray all the time. When I am all alone....I'm not. I believe there is something bigger than me at work here and I have to trust in it. Before any of this happened I had memorized a few prayers (at the suggestion of T). At the time I thought it was kind of stupid. I am so thankful to have memorized them. They carry me through every procedure and test and moment of fear and doubt. They soothe me and comfort me in a way that I can't describe.
I'm not sure what is coming next but I know it is going to be ok. Whatever the outcome, it will be fine.
God, I love Michael Jackson.....I'm going to do so much dancing when this is over!!!
So, the last blood patch didn't do anything. No help at all. The MRI wasn't particularly helpful. On Oct 29th my vacation/sick time ran out and as a fellow we don't have short term disability. Things were looking grim. Mere and I were fighting, mostly because I was attempting to make everyone around me as miserable as I had become. Thankfully, a friend told me to quit feeling sorry for myself and start looking for solutions. Up to this point I just kept thinking that my doctors would figure this out and that the end was just around the corner. I didn't want to be one of those crazy, internet obsessed patients who always thinks that go.ogle is the answer to everything. I ended up on Pub.Med doing searches for intracranial hypotension. I scanned all of the publications for the name that appeared the most. There were 2, a neurosurgeon at Ced.ars S.inai in LA and a neurologist at the M.ayo Clinic in Minnesota. I found a message board with a lot of people who had great things to say about Dr. S in LA. Sunday night I emailed Dr. S and I drafted and email to my team of doctors at U.AMS (my primary care doctor, the anethesiologist, the neuroradiologist, and the neurologist) asking them to all sit down together, discuss my case, and come up with a plan. By 1pm the next day, Dr. S's nurse at Ced.ars S.inai called me and told me what information they needed and how to get it to him. Dr. S had also responded to my personal email and mentioned doing a subtraction myelogram (something no one here had done or mentioned). I called Dr. VH (neuroradiologist) and asked him about the subtraction myelogram. Being the awesome doctor that he is, he started to investigate the possibility immediately. They weren't done at U.AMS but he thought he might be able to do it. He also told me that everyone was meeting the next day to discuss my case.
By 2pm the next day my PCP (and good friend) called to tell me the results of the meeting that all my doctors had earlier that morning. The news was mixed. I could hear the fear and hesitation in her voice. I guess that is the only downside of being good friends with your doctor. She said, "I'm going to level with you." Uhmmm....OK. The key was still in localizing the leak. Dr. VH had devised a plan to do a subtraction myelogram the following morning. The main issue with the subtraction myelogram is that it only visualizes the cervical spine. If it was positive, then we would have some direction, but a negative test would still leave us with more questions then answers. She said, "if the leak is cervical we can try one more blood patch, then surgery. The surgery would be no walk in the park, but it is do-able. We will have to discuss it with the neurosurgeon at U.AMS but they can probably do it here. If you want to go to LA, then we will refer you there and you can have it there. Whatever you want." OK. Then the bomb. She said, "if the leak is thoracic, then this is major. The surgery has a 20-30% mortality rate, the recovery is long, and it can't be done here. They will have to collapse your lungs, you will be in intensive care for a few days, and you might not survive it. It is a big deal. Jessica, listen to me. You have to stay strong, healthy, and together. You have to sleep. You have to eat healthy. I'm going to be with you through this but you cannot fall apart, you just can't. You can't get depressed. You have to be strong. You can't get depressed. We need to keep your immune system in check. I will be with you every step of the way." We talked for a few more minutes and I was given instructions on where to be the next day for the subtraction myelogram.
Thankfully, Mere and T (a very close friend and advisor) were here when she called. I don't entirely remember the conversation that followed. Needless to say, we were all in shock (at least I was). I wanted to disappear, which is what I always want to do in times of stress. I just wanted to crawl in a hole and go into complete shutdown mode. I wanted to drink (a lot), take as many pills as I could find, and sleep for as long as I could. We didn't sign up for this. When this started I was just worried about the financial implications of being out of commission for a month. Now we were talking major surgery in another city with a high mortality rate. What!!!???? About a hour later, the neurologist called. He went on to tell me that if I was his daughter he would try to do everything to avoid surgery if the tear was thoracic. One option (he said) was to put a shunt in my back and drain the CSF (to give the dura time to heal) while I was on 100% complete bed rest (like foley catheter, sponge bath kind of bed rest). Of course, I would need heavy painkillers because the low pressure caused by the CSF shunt would be very painful. Oh yeah, the bed rest could be several months in duration. Talk about options! Risky surgery vs painful, strict bed rest. I'm thinking after a few weeks of that kind of bed rest I would be ready to take a gun to my head, if Mere didn't beat me to it! Ughhh! That was a long day (night). That night there were some very tender moments with Mere and T that will forever be etched in my heart. It is rare to get to a place where there are ZERO walls between people and I'm not sure I've had ever been there before that night. It makes you feel scared and naked and raw. But, I also felt so safe and loved. I have never asked anyone to pray with me, that night I did. I wanted to disappear, but the people I love wouldn't let me. They kept me here, grounded, and grateful.
The next morning we were up bright and early at U.AMS. I walked into the room (my first time in THIS procedure room) and there were huge machines everywhere. Of course, I started crying immediately because that is what I do now. Not to mention there were at least 20 people in the room (a lot of them doctors) and nervous energy. You never want to be the patient that doctors from the entire department come to see. You don't want to be the recipient of a novel technique or "cool" new therapy. These are not the ways in which one wants to get attention. Dr. VH walked into the room and a huge wave of relief washed over me. I'm telling you, when this is over I am going to do something so special for him (if you have any great ideas, let me know). Dr. VH put me in a totally crazy position on the table (face down, neck flexed, arms up) and injected dye into my spinal cord (at the level of my neck just below my ear). Then machines were circling around me for about 20 minutes. Then I was allowed to roll over on my back and "relax" while they all looked at the images. What do you think I did? Yep, just cried and cried. I wasn't in any pain. Actually, the neck stick was WAY better then being stuck in the back which I would have NEVER believed. One of the residents walked over and I asked, "did you find it?" She said, "I think so, but don't get excited yet." A few minutes later, Dr. VH came over and said that he felt like it was in C6/C7/T1/T2 but that he would need at least a day to reconstruct all the images to be sure.
They released me home back to my couch to wait. In the meantime, Dr. S's nurse from LA called to let me know they had received my films (I am still waiting to hear more from him). I got a call about 1pm today from Dr. VH that he felt pretty certain we were looking at multiple tears in C6/C7/T1, anterior and posterior. He has talked to the interventional neuroradiologist and the plan is for an anterior cervical blood patch. So, at 7am tomorrow I get a new procedure and a new doctor. This time I will be sedated (there is always something to be grateful for). Dr. VH is collecting all of the images from the subtraction myelogram so we can get them to LA ASAP.
I am learning that asking about the next step rarely produces concrete answers. If this doesn't work (and it will take a few days to know if it will work), then we will likely end up in LA. But, NOTHING is set in stone right now. I don't know what is coming next. When you think about it, none of us really knows....we just think we do.
There are so many things I am learning. I know that we have the best friends/family in the world (yes, I'm sure you do to). We have had meals here every night this week, the phone is always ringing, and the girls have a wealth of places to go while we are at the hospital. The most amazing thing? We don't even have to ask. It's just done. It just is.
Mere and I are closer by the minute. I have always known she is my soulmate but her strength and beauty through all of this makes me fall in love with her over and over and over again. We have held each other, cried, laughed, screamed, and everything in between. The point is that we are always safe with each other. At the end of the day, she is who I want when I wake up and there has been a lot of waking up over the last year. When she is here, it is ok. No one deserves what we have, we are just so lucky.
I am so grateful for my girls. They just make it all good. How bad can a day really be when Laynie smiles at you? Just before this happened Syd had started sleeping in her own bed. Suprise! She is back in our bed. She sleeps curled up next to me all night and keeps me warm and happy. There is no other place I would rather be. Layne is always asking me if I feel better. We have had time together that we never would have had. Hours on the sofa reading books and telling stories.
I've never thought of myself as a very spiritual or religious person but that is changing fast. I pray all the time. When I am all alone....I'm not. I believe there is something bigger than me at work here and I have to trust in it. Before any of this happened I had memorized a few prayers (at the suggestion of T). At the time I thought it was kind of stupid. I am so thankful to have memorized them. They carry me through every procedure and test and moment of fear and doubt. They soothe me and comfort me in a way that I can't describe.
I'm not sure what is coming next but I know it is going to be ok. Whatever the outcome, it will be fine.
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