I had a post in my head. I swear, I did but now it is gone. I'm not even 100% sure what it was supposed to be about, but I'm pretty sure it was good. I think there might be some permanent brain damage. Sometimes there just aren't words.
A few things I've done for the first time all over again
-danced with the girls in the kitchen
-gave the girls a bath
-gone to 2 movies (New Moon and Alvin and the Chipmunks)
-D.R.O.V.E my car. Yes, windows down and music up. Alone.
-put Layne to bed
-cooked dinner
-trip to the new K.roger
-gone to church
-walked up stairs
By the way, it is really cold outside! When you miss the weather transition it is kinda harsh. Oh yeah, and Christmas is over....how did that happen? I was just looking over my posts from this time last year. It is all different now. All of it. Here we go again.....
Sunday, December 27, 2009
Monday, December 21, 2009
Waking up
I lost a week. An entire week. It is gone. Just fleeting moments of memories here and there but basically gone. A little bit comes back here and there and I have to ask Mere, "did that happen? What happened? Did I dream that or was it real?" I am waking up and really feel sort of shell shocked. I didn't even know that Christmas was Friday until yesterday. It is impossible to describe how it feels to drop out of life and then come back.
LA seems like it happened so long ago. Surgery seems like a million miles away. The hospital, the ER, the MRIs, the myelograms. It was a string of events that seems so distant, but it was just a few weeks ago.
Basically, what happened was that I quit taking my pain medications. I had been on a cocktail of narcotics, anti-nausea pills, and various other meds for over a month. Once we got home I felt so much better so I quit taking the narcotics. Monday afternoon I started to feel like bugs were under my skin (similar to my reaction to c.ompazine). I went home and took some of the meds that I had taken for the dyskinesia reaction and some pain medications. I felt better that night and actually slept ok. The next morning, it was back. I felt my heart racing and I couldn't sit still. I felt like bugs were under my skin. It was SO uncomfortable, I could not sit still. I called my PCP and she told me to go to the ER. That is when they told me I was going through withdrawals. That was Wednesday. That is when I dropped out of life and didn't get back until yesterday (Sunday). The doctor offered to keep me in the hospital for the withdrawal process. They also offered m.ethadone and/or c.lonidine (a blood pressure med that has additional properties that help the withdrawal process). I had just gotten out of the hospital and didn't want to go back (but I would have stayed if I had any idea how miserable the withdrawals would be) and I didn't want to have to get on m.ethadone and then withdrawal from it so I agreed to go home with clonidine and wait it out. Keep in mind they had given me some IV a.tivan so I was already feeling better. I had no idea what the following days would be like. The ER doctor basically told me that I would not die but I would feel like I was...that was an understatement.
Apparently, Tommie and Meredith banded together that night and decided to get rid of all the drugs and make me tough it out, figuring that I would be 100% by Christmas. The alternative of weaning me and going through a long process didn't appeal to either of them. They just wanted me back to normal as fast as possible and they knew that once the withdrawals got bad I would be desperate for ANYTHING to make them stop. Their logic was sound and I'm glad that they did it that way. Tough love was what I needed, even though I spent a few days hating them both. The days that followed made everything up to that point seem like a cake walk. I don't remember much about the first 2 days except that I stayed in bed and just took c.lonidine and tried to sleep as much as possible. I didn't eat or drink. I sporadically remember Mere and the girls coming in and out of the bedroom. I remember Tommie telling me just 24 more hours, just 24 more hours, tomorrow will be better. The next 2 days Tommie basically became the drink Nazi, pouring fluids down every minute. If I wasn't drinking, she was telling me to drink. And the more I drank, the better I felt. Then the stomach cramps started...that was fun. Everything that went in, came out. Then Tommie made me eat...bland cookies, toast, and of course more fluids. Everyday got a little better and by yesterday I was actually starting to feel human again. My sleeping patterns are still really messed up and I'm still not able to eat much. G.atorade is my friend. At least now I can interact with my family and be present.
I'm still in shock over the entire experience. It still seems like something that happened to someone else. Our lives are just starting to get back to normal. There are tons of presents to wrap (we haven't even started) and the medical bills are starting to pile in (there are a lot). We are going to be climbing out of this hole for awhile, but I know we are on the right tract now. I am thankful for this experience. It has changed me in ways that I can't translate into words. It has strengthened my relationship with Mere in ways I never thought possible. I KNOW what love is. I know that I am loved. I know what is important to me. I know that there is some cosmic reason that we went through all of this. I know that it is my job to have fun and enjoy this life. And, PAY ATTENTION!
There is still a tiny little part of me that wants to crawl into a little hole and hide out....I've been so sheltered and out of the loop for so long. Now that I'm back, it is weird. Don't get me wrong, it is WONDERFULLY weird. I am so happy to be here. I'm happy to be alive. I am blessed with amazing children and a wife made of steel. Now I have to go cuddle with my girlies....ahhh....heaven.
LA seems like it happened so long ago. Surgery seems like a million miles away. The hospital, the ER, the MRIs, the myelograms. It was a string of events that seems so distant, but it was just a few weeks ago.
Basically, what happened was that I quit taking my pain medications. I had been on a cocktail of narcotics, anti-nausea pills, and various other meds for over a month. Once we got home I felt so much better so I quit taking the narcotics. Monday afternoon I started to feel like bugs were under my skin (similar to my reaction to c.ompazine). I went home and took some of the meds that I had taken for the dyskinesia reaction and some pain medications. I felt better that night and actually slept ok. The next morning, it was back. I felt my heart racing and I couldn't sit still. I felt like bugs were under my skin. It was SO uncomfortable, I could not sit still. I called my PCP and she told me to go to the ER. That is when they told me I was going through withdrawals. That was Wednesday. That is when I dropped out of life and didn't get back until yesterday (Sunday). The doctor offered to keep me in the hospital for the withdrawal process. They also offered m.ethadone and/or c.lonidine (a blood pressure med that has additional properties that help the withdrawal process). I had just gotten out of the hospital and didn't want to go back (but I would have stayed if I had any idea how miserable the withdrawals would be) and I didn't want to have to get on m.ethadone and then withdrawal from it so I agreed to go home with clonidine and wait it out. Keep in mind they had given me some IV a.tivan so I was already feeling better. I had no idea what the following days would be like. The ER doctor basically told me that I would not die but I would feel like I was...that was an understatement.
Apparently, Tommie and Meredith banded together that night and decided to get rid of all the drugs and make me tough it out, figuring that I would be 100% by Christmas. The alternative of weaning me and going through a long process didn't appeal to either of them. They just wanted me back to normal as fast as possible and they knew that once the withdrawals got bad I would be desperate for ANYTHING to make them stop. Their logic was sound and I'm glad that they did it that way. Tough love was what I needed, even though I spent a few days hating them both. The days that followed made everything up to that point seem like a cake walk. I don't remember much about the first 2 days except that I stayed in bed and just took c.lonidine and tried to sleep as much as possible. I didn't eat or drink. I sporadically remember Mere and the girls coming in and out of the bedroom. I remember Tommie telling me just 24 more hours, just 24 more hours, tomorrow will be better. The next 2 days Tommie basically became the drink Nazi, pouring fluids down every minute. If I wasn't drinking, she was telling me to drink. And the more I drank, the better I felt. Then the stomach cramps started...that was fun. Everything that went in, came out. Then Tommie made me eat...bland cookies, toast, and of course more fluids. Everyday got a little better and by yesterday I was actually starting to feel human again. My sleeping patterns are still really messed up and I'm still not able to eat much. G.atorade is my friend. At least now I can interact with my family and be present.
I'm still in shock over the entire experience. It still seems like something that happened to someone else. Our lives are just starting to get back to normal. There are tons of presents to wrap (we haven't even started) and the medical bills are starting to pile in (there are a lot). We are going to be climbing out of this hole for awhile, but I know we are on the right tract now. I am thankful for this experience. It has changed me in ways that I can't translate into words. It has strengthened my relationship with Mere in ways I never thought possible. I KNOW what love is. I know that I am loved. I know what is important to me. I know that there is some cosmic reason that we went through all of this. I know that it is my job to have fun and enjoy this life. And, PAY ATTENTION!
There is still a tiny little part of me that wants to crawl into a little hole and hide out....I've been so sheltered and out of the loop for so long. Now that I'm back, it is weird. Don't get me wrong, it is WONDERFULLY weird. I am so happy to be here. I'm happy to be alive. I am blessed with amazing children and a wife made of steel. Now I have to go cuddle with my girlies....ahhh....heaven.
Wednesday, December 9, 2009
Just say no (to c.ompazine)
HI guys! Thank you to all my cyber friends for all your prayers and good vibes. I am doing much better and feeling almost back to normal.
My surgery went well. I have a C5/C6 fusion and a 2 inch scar on the front of my neck, but am otherwise doing good. The first night in the hospital was HELL! The neurosurgery resident was not very forthcoming with pains meds. They had me on IV d.ilaudid and o.xycodone. Which sounds like a lot, but I have a tolerance for drugs because I have been on narcotics over a month. Unfortunately, i have since found out that I am allergic to D.ilaudid. It made me super hot, flushed (and very RED), and restless. And I was supposed to lay flat. I would get dilaudid, pass out for about 15 minutes and then we would start the pain cycle all over again. Granted, I was pretty doped up but every time they gave me D.Ilaudid I felt worse. Making matters worse were the most uncomfortable compression stockings all the way up my thigh, the foley catheter, AND having to lay 100% flat for the entire night. Poor Tommie was with me and trying so hard to keep me positive. Every time I moved or made a noise she jumped up and tried to help. Mostly, she had to "baby" me and just be sympathetic. She didn't get any sleep the first night either! That first 24 hours will always be etched in my mind and one of my worst moments of my life. Luckily, when Dr. S rounded the next morning, he changed my pain meds around, let me get up, and took of the terrible compression hose. Finally, things were looking up. After I took a shower (basically, Mere gave me a shower) and worked with the physical therapists, my pain level was starting to inch upward. I called for another dose of d.ilaudid (since it was to soon for o.xycodone).....once it hit my veins, my heart rate went up, I got extremely hot, and I felt TERRIBLE. That is when it occurred to me that maybe I have a d.ilaudid allergy. D.ilaudid will never go in my IV again. EVER. Period.
The following 2 days were pretty uneventful. Tommie, Mere, and I played games and just hung out and then discharge! Yeah! Unfortunately, our time at the hospital was not over because we ended up taking a trip the ER last night. Around 2pm yesterday I started to feel funny. It felt like there were little bugs under my skin, my mouth got really dry, my neck and jaw stiffened, and I felt TERRIBLE. So, Mere took me to the emergency room. By the time we got there, I could barely talk. The triage nurse took my vital signs and my heart rate was racing at 151 bpm (normal is 40-100, I usually stay around 80). Within 15 minutes I was in a bed, with an IV, and waiting for the doctor. When the doctor came in and I explained my symptoms he said, "have you been taking c.ompazine?" Yes, Yes, Yes. I have been taking it for nausea for about a month. He said, "you are experiencing dyskinesia." And c.ompazine is one of the drugs that leads to dyskinesia. They gave me IV b.enadryl and C.ogentin and I was better within a hour. Talk about a miracle drug. Oh yeah, I will never allow someone to give me IV b.enadrly again...it really made me feel funny (bad funny, not good funny). I have sense found out the c.ompazine cause irritability, mood swings, double vision, and severe constipation...all things that have been happening since I started taking it. All of which explains a LOT. It takes 2 days for the c.ompazine to leave your system so in the meantime I am trying to stay relaxed and take b.enadryl and c.ogentin. But dyskinesia is pretty painful/difficult/strange! It scared the shit out of Mere.
Did the surgery work? I think so but cannot be 100% sure until all the post op pain is gone so I can tell if the headaches are from surgery or a leaky spine. But, I do feel like I am fixed. But, if I'm not then we will come back and do it all over again. Dr. S said my success rate is about 87%, which includes people that he has had to operate on more than once. I like 87%. I will take it. If we have to come back, then we will come back. We are beating this thing for sure!!!!
I think that is all I have to report right now. I will keep you all posted.
My surgery went well. I have a C5/C6 fusion and a 2 inch scar on the front of my neck, but am otherwise doing good. The first night in the hospital was HELL! The neurosurgery resident was not very forthcoming with pains meds. They had me on IV d.ilaudid and o.xycodone. Which sounds like a lot, but I have a tolerance for drugs because I have been on narcotics over a month. Unfortunately, i have since found out that I am allergic to D.ilaudid. It made me super hot, flushed (and very RED), and restless. And I was supposed to lay flat. I would get dilaudid, pass out for about 15 minutes and then we would start the pain cycle all over again. Granted, I was pretty doped up but every time they gave me D.Ilaudid I felt worse. Making matters worse were the most uncomfortable compression stockings all the way up my thigh, the foley catheter, AND having to lay 100% flat for the entire night. Poor Tommie was with me and trying so hard to keep me positive. Every time I moved or made a noise she jumped up and tried to help. Mostly, she had to "baby" me and just be sympathetic. She didn't get any sleep the first night either! That first 24 hours will always be etched in my mind and one of my worst moments of my life. Luckily, when Dr. S rounded the next morning, he changed my pain meds around, let me get up, and took of the terrible compression hose. Finally, things were looking up. After I took a shower (basically, Mere gave me a shower) and worked with the physical therapists, my pain level was starting to inch upward. I called for another dose of d.ilaudid (since it was to soon for o.xycodone).....once it hit my veins, my heart rate went up, I got extremely hot, and I felt TERRIBLE. That is when it occurred to me that maybe I have a d.ilaudid allergy. D.ilaudid will never go in my IV again. EVER. Period.
The following 2 days were pretty uneventful. Tommie, Mere, and I played games and just hung out and then discharge! Yeah! Unfortunately, our time at the hospital was not over because we ended up taking a trip the ER last night. Around 2pm yesterday I started to feel funny. It felt like there were little bugs under my skin, my mouth got really dry, my neck and jaw stiffened, and I felt TERRIBLE. So, Mere took me to the emergency room. By the time we got there, I could barely talk. The triage nurse took my vital signs and my heart rate was racing at 151 bpm (normal is 40-100, I usually stay around 80). Within 15 minutes I was in a bed, with an IV, and waiting for the doctor. When the doctor came in and I explained my symptoms he said, "have you been taking c.ompazine?" Yes, Yes, Yes. I have been taking it for nausea for about a month. He said, "you are experiencing dyskinesia." And c.ompazine is one of the drugs that leads to dyskinesia. They gave me IV b.enadryl and C.ogentin and I was better within a hour. Talk about a miracle drug. Oh yeah, I will never allow someone to give me IV b.enadrly again...it really made me feel funny (bad funny, not good funny). I have sense found out the c.ompazine cause irritability, mood swings, double vision, and severe constipation...all things that have been happening since I started taking it. All of which explains a LOT. It takes 2 days for the c.ompazine to leave your system so in the meantime I am trying to stay relaxed and take b.enadryl and c.ogentin. But dyskinesia is pretty painful/difficult/strange! It scared the shit out of Mere.
Did the surgery work? I think so but cannot be 100% sure until all the post op pain is gone so I can tell if the headaches are from surgery or a leaky spine. But, I do feel like I am fixed. But, if I'm not then we will come back and do it all over again. Dr. S said my success rate is about 87%, which includes people that he has had to operate on more than once. I like 87%. I will take it. If we have to come back, then we will come back. We are beating this thing for sure!!!!
I think that is all I have to report right now. I will keep you all posted.
Thursday, December 3, 2009
Today's the Day
This is Mere posting for Jess.
Surgery is today at 11:45am PST. So for the sake of not having to double post, I'll be putting updates on my blog. So head on over there. I'll try to update this evening after surgery (should last about 2.5 hours) and Jess is out of recovery and all settled into her room. If I don't post tonight, I'll post first thing in the morning.
Send your positive thoughts Jess's way!
Surgery is today at 11:45am PST. So for the sake of not having to double post, I'll be putting updates on my blog. So head on over there. I'll try to update this evening after surgery (should last about 2.5 hours) and Jess is out of recovery and all settled into her room. If I don't post tonight, I'll post first thing in the morning.
Send your positive thoughts Jess's way!
Tuesday, December 1, 2009
Thank God it is me!
Today was the day. The day to get some answers, the day we met Dr. S (the neurosurgeon that we came to see). He was super nice and my appointment went great. The best part of it all? He was not impressed with me.....he has seen plenty of patients like me and operated on over 100 of us. FINALLY, a doctor with answers instead of questions. It was refreshing and made us both feel good. Here are some answers we got during our visit:
- Mortality rate is 0 (yeah!!!!)
- Risks include paralysis, loss of my voice (if he has to go anteriorly), decrease in neck mobility, etc, etc. He has not had any of the aforementioned outcomes in his patients.
- I probably will not have to be in the ICU after surgery and can always have someone stay with me in my room
- I will be in the hospital for 4 days
- I have to stay in LA for at least one week after surgery
- The success rate for my case is about 87%, this includes cases where he has had to operate more than once. Hopefully, I won't need more than on operation. What happens to the other 13%? Who knows...not gonna be me!
- My operation will be at 11:45 am on Thursday and last approximately 2.5 hours so please send me all of your good vibes during that time!!
After the visit I had to go pre-register, get my blood drawn, and then have ANOTHER MRI. Apparently, Dr. S wanted a brain MRI in addition to the spine MRI I had yesterday. Luckily, this one only took about a hour (thank God). I was walking back into the MRI and I saw them bringing out a little girl about Syd's age who was sedated and had just finished getting her MRI. All I could think was THANK GOD I'm the one who is sick. Those poor, poor parents with a sick baby girl. In that moment I was overcome with gratitude. Amazing how things happen. The MRI was uneventful and quick. Oh, and they played the B.lack Eyed Peas song again while I was getting scanned. It was hard not to dance.
Tomorrow is my myelogram. UGHHHH, not excited about it but hopeful that this is the last one, EVER. On the flip side, Tommie comes in tomorrow.....one good thing and one bad thing. I know Mere is ready for her to be here because I will be on my best behavior. The pain medications make me SO grouchy!!!!
- Mortality rate is 0 (yeah!!!!)
- Risks include paralysis, loss of my voice (if he has to go anteriorly), decrease in neck mobility, etc, etc. He has not had any of the aforementioned outcomes in his patients.
- I probably will not have to be in the ICU after surgery and can always have someone stay with me in my room
- I will be in the hospital for 4 days
- I have to stay in LA for at least one week after surgery
- The success rate for my case is about 87%, this includes cases where he has had to operate more than once. Hopefully, I won't need more than on operation. What happens to the other 13%? Who knows...not gonna be me!
- My operation will be at 11:45 am on Thursday and last approximately 2.5 hours so please send me all of your good vibes during that time!!
After the visit I had to go pre-register, get my blood drawn, and then have ANOTHER MRI. Apparently, Dr. S wanted a brain MRI in addition to the spine MRI I had yesterday. Luckily, this one only took about a hour (thank God). I was walking back into the MRI and I saw them bringing out a little girl about Syd's age who was sedated and had just finished getting her MRI. All I could think was THANK GOD I'm the one who is sick. Those poor, poor parents with a sick baby girl. In that moment I was overcome with gratitude. Amazing how things happen. The MRI was uneventful and quick. Oh, and they played the B.lack Eyed Peas song again while I was getting scanned. It was hard not to dance.
Tomorrow is my myelogram. UGHHHH, not excited about it but hopeful that this is the last one, EVER. On the flip side, Tommie comes in tomorrow.....one good thing and one bad thing. I know Mere is ready for her to be here because I will be on my best behavior. The pain medications make me SO grouchy!!!!
I stand corrected
Ok...I have mentioned before that I like the MRI machine. I think I even used the word Zen. Maybe that is just U.AMS's machine or maybe it is impossible to feel zen when you have to lay perfectly still in an uncomfortable position for 3 hours. Either way, it is over....one down, 500 to go! At least there was music. They had headphones that go on top of the ear plugs for you listening pleasure. Just when I thought I couldn't make it through, the B.lack Eyed Peas song, M.eet Me Halfway came on and made me smile. I could picture Tommie singing it and I knew I could make it through the rest of the MRI. Music can get you through anything, and X.anax. God is everywhere, sending me signs (or maybe I'm just going crazy).
Speaking of signs......
After checking in at the front desk of the imaging center a man called me back to register me. His name? Rudy! Rudy!!! Can you believe it? If you are confused then check out my post titled, Where the Beautiful People Are. Anyway, I was smiling from ear-to-ear. Seriously, that is a sign, FOR REAL!!!
Today is appointment with Dr. S. Hopefully, my next post will be packed full of useful updates.
Speaking of signs......
After checking in at the front desk of the imaging center a man called me back to register me. His name? Rudy! Rudy!!! Can you believe it? If you are confused then check out my post titled, Where the Beautiful People Are. Anyway, I was smiling from ear-to-ear. Seriously, that is a sign, FOR REAL!!!
Today is appointment with Dr. S. Hopefully, my next post will be packed full of useful updates.
Sunday, November 29, 2009
Recalculating
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.
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.
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.
Wednesday, October 28, 2009
MRI or meditation machine??
So, at the end of the two weeks I was treated to another myelogram. This time Dr.VH wanted to inject the dye and get me to the scanner ASAP in hopes of better localizing the leak. The plan (funny, that word) was that we would do the myelogram and then Dr. VH would talk to Dr. G and then I would be off for blood patch #2. Bright and early Monday morning there we were....waiting. After about a hour I was finally all prepped and ready to get going. Dr. VH said, "before I stick you I want to run to the CT scanner and make sure that they have it open and ready because we are going to rush you over there." He came back a few minutes later and informed us that the scan had not been pre authorized by insurance and so I didn't even have a requisition number, they couldn't scan, etc. Shocking! Something went wrong, I don't believe it! After another hour of waiting and calls to my PCP (who has to order all this stuff and deal with the pre authorizations) I was back on the table in starting position. This myelogram was the easiest yet. Minimal pain and FAST. Off to the CT scanner.
The results? Still leaking. Better than before but still a lot of leaking. Dr. VH said he needed to go sit and reconstruct some images to try and get a better idea of where it was coming from. I was wheeled to recovery and then wheeled to preop where they started to prep me for the blood patch. IV fluids? check. Consent signed? check. Hospital gown? check. Dr. G ready? check. Then the call came from Dr. VH. His words? "I'm confused." Not something you want to hear the neuroradiologist say. Dr. VH didn't feel like he could tell them where to put the patch and felt like a spine MRI was in order before putting me through any additional procedures. They scheduled me for the MRI the following day.
I have decided, I like the MRI. There is just something about all that noise that sort of hypnotizes me. I get a lot of good praying, day dreaming, and general zen like feelings in that scanner. There wasn't even a hint of anxiety this time.....I'm an old pro! I was in the scanner for about 1 1/2 hours. Seriously, by the time I came out I felt like I had been at a retreat. Refreshed and kinda clear. See, NOTHING can get you in the MRI. It is just you and the machine. In those minutes it is really like the world stops. Ok...well...I digress.
Out of the scanner and back with Dr. VH. The news? UGhhhhhh!! Still doesn't know where the leak is coming from. He knows a few things...it is likely a large tear.....when he can localize it someone will be able to fix it....we are all so frustrated. Now we are on plan D, blood patch from C6-T4 tomorrow, followed by bedrest and a repeat myelogram on Tuesday. After that? Not sure. We are definately on a day by day plan here.
The results? Still leaking. Better than before but still a lot of leaking. Dr. VH said he needed to go sit and reconstruct some images to try and get a better idea of where it was coming from. I was wheeled to recovery and then wheeled to preop where they started to prep me for the blood patch. IV fluids? check. Consent signed? check. Hospital gown? check. Dr. G ready? check. Then the call came from Dr. VH. His words? "I'm confused." Not something you want to hear the neuroradiologist say. Dr. VH didn't feel like he could tell them where to put the patch and felt like a spine MRI was in order before putting me through any additional procedures. They scheduled me for the MRI the following day.
I have decided, I like the MRI. There is just something about all that noise that sort of hypnotizes me. I get a lot of good praying, day dreaming, and general zen like feelings in that scanner. There wasn't even a hint of anxiety this time.....I'm an old pro! I was in the scanner for about 1 1/2 hours. Seriously, by the time I came out I felt like I had been at a retreat. Refreshed and kinda clear. See, NOTHING can get you in the MRI. It is just you and the machine. In those minutes it is really like the world stops. Ok...well...I digress.
Out of the scanner and back with Dr. VH. The news? UGhhhhhh!! Still doesn't know where the leak is coming from. He knows a few things...it is likely a large tear.....when he can localize it someone will be able to fix it....we are all so frustrated. Now we are on plan D, blood patch from C6-T4 tomorrow, followed by bedrest and a repeat myelogram on Tuesday. After that? Not sure. We are definately on a day by day plan here.
The Other Side, part 3
I'm starting to think this is going to be a million part story. But, I really want to capture this whole event so I can go back to it years from now when things seem bad.
The weekend came and went. Unfortunately, Mere had her embryo transfer on Friday afternoon leaving us both on bed rest for 48 hours. Fortunately, we are blessed with an incredible network of friends and family who stepped up and took care of the girls (and us). It really is amazing how many people come out of the woodwork when the going gets rough. It made us both realize that we are at home here, this is where we belong, these are OUR people.
Monday morning came and we were back at the med center. Before they started a woman came in the room and said, "I need you to sign this paper saying that you will pay for this procedure if your insurance doesn't because we don't have preapproval on this yet." I said, "NO!" and she left. This time, Dr. VH did the stick and it was 100 million times BETTER. In fact, the stick wasn't even painful. When he ran the dye up my spine that hurt, a lot. But, it was fast and I knew it was coming. They got me through the scanner and into recovery. While I was laying there, my phone rang, it was Dr. H's office (the previously mentioned neurologist). The person on the other end was calling to inform me that insurance had approved the CT of the spine but not the brain, blah, blah, blah, blah...so on and so forth. Basically, I told her that we would have to deal with it later and that they were repeating this whole mess because Dr. H had messed up in the first place. Luckily, Dr. VH heard about all of this and put an abrupt end to it...no charge...leave her (me) alone. We were thinking that we would be there all day again for multiple scans, but no so. Dr. VH came into the room with the characteristic, "I have good news and bad news. The leak is really big. I can't tell exactly where it is but I think I can get them to the right region." Ohhhh, ok.
After a few phone calls and some more discussion the anethesiology resident showed up in recovery. She was working with Dr. G (anethesiologist) and he was going to do a blood patch. Dr. G and Dr. VH spoke and decided to put the patch in the region of T3-T7. Off to the procedure room we went. Again, I was face down on the fluoro table while Dr. G (well, his resident) guided the needle into my spine. They hit a nerve, I jumped, and they had to pull out and start at a lower position. Once they got the spot and threaded the catheter up my spine, the nurse went to draw blood from my hand. "Are you a hard stick?" she asked. "No," I said. Ok, well, at least I never knew I was a hard stick until that moment. So, I'm on my stomach with a needle in my back and my hand hanging off the table. 3 sticks with an 18 gauge needle later, they got blood. Dr. G slowly put the blood into my spinal column (a blood patch) and told me to tell him when the pressure became pain. After about 18cc's of blood, it became painful. They pulled out the needles and let me sit up, slowly. The difference was amazing. There was still some pain, but NOTHING like what I had been feeling. I could move my neck around without pain and I could sit up without feeling like my head was going to explode. No nausea, no ringing in my ears, yeah!!!! They watched me in recovery for awhile and sent me home with instructions for "taking it easy" for a few days. I went home that night and stuck mostly to the sofa. The next day, I took a shower, a LONG one. By the time I was dressed, the headache and nausea were back, so was the fear. Long story short, I was put back on strict bedrest for 2 weeks.
The weekend came and went. Unfortunately, Mere had her embryo transfer on Friday afternoon leaving us both on bed rest for 48 hours. Fortunately, we are blessed with an incredible network of friends and family who stepped up and took care of the girls (and us). It really is amazing how many people come out of the woodwork when the going gets rough. It made us both realize that we are at home here, this is where we belong, these are OUR people.
Monday morning came and we were back at the med center. Before they started a woman came in the room and said, "I need you to sign this paper saying that you will pay for this procedure if your insurance doesn't because we don't have preapproval on this yet." I said, "NO!" and she left. This time, Dr. VH did the stick and it was 100 million times BETTER. In fact, the stick wasn't even painful. When he ran the dye up my spine that hurt, a lot. But, it was fast and I knew it was coming. They got me through the scanner and into recovery. While I was laying there, my phone rang, it was Dr. H's office (the previously mentioned neurologist). The person on the other end was calling to inform me that insurance had approved the CT of the spine but not the brain, blah, blah, blah, blah...so on and so forth. Basically, I told her that we would have to deal with it later and that they were repeating this whole mess because Dr. H had messed up in the first place. Luckily, Dr. VH heard about all of this and put an abrupt end to it...no charge...leave her (me) alone. We were thinking that we would be there all day again for multiple scans, but no so. Dr. VH came into the room with the characteristic, "I have good news and bad news. The leak is really big. I can't tell exactly where it is but I think I can get them to the right region." Ohhhh, ok.
After a few phone calls and some more discussion the anethesiology resident showed up in recovery. She was working with Dr. G (anethesiologist) and he was going to do a blood patch. Dr. G and Dr. VH spoke and decided to put the patch in the region of T3-T7. Off to the procedure room we went. Again, I was face down on the fluoro table while Dr. G (well, his resident) guided the needle into my spine. They hit a nerve, I jumped, and they had to pull out and start at a lower position. Once they got the spot and threaded the catheter up my spine, the nurse went to draw blood from my hand. "Are you a hard stick?" she asked. "No," I said. Ok, well, at least I never knew I was a hard stick until that moment. So, I'm on my stomach with a needle in my back and my hand hanging off the table. 3 sticks with an 18 gauge needle later, they got blood. Dr. G slowly put the blood into my spinal column (a blood patch) and told me to tell him when the pressure became pain. After about 18cc's of blood, it became painful. They pulled out the needles and let me sit up, slowly. The difference was amazing. There was still some pain, but NOTHING like what I had been feeling. I could move my neck around without pain and I could sit up without feeling like my head was going to explode. No nausea, no ringing in my ears, yeah!!!! They watched me in recovery for awhile and sent me home with instructions for "taking it easy" for a few days. I went home that night and stuck mostly to the sofa. The next day, I took a shower, a LONG one. By the time I was dressed, the headache and nausea were back, so was the fear. Long story short, I was put back on strict bedrest for 2 weeks.
Thursday, October 22, 2009
The Other side, part 2
The next morning we were up and out, checked in at UAMS at 8am. Of course, when I got there, they had NO idea I was supposed to be there or what to do with me. I was warned that this would be the case since this had all been scheduled late the previous day. Luckily, they let me lay down while they figured it all out and got things moving. There was a lot of waiting and being wheeled from room to room. Again, I couldn't help note how scary this would be to the average patient......big, loud machines (which I have seen before) and a host of confused people.
Eventually, they figured everything out and got me prepped and ready for the myelogram. During a typical myelogram the patient lays face down while the neuroradiologist uses fluoroscopy to guide him in doing a lumbar puncture (spinal tap). Once in the correct space, he/she injects contrast dye into the spinal column, tilts the table up so that you are almost on your head (to move the dye around your spinal cord), and then puts you in the CT scanner to localize where the contrast is leaking out and find the defect. For reasons that are still unclear to all involved, Dr. H (the head of neurology and previously mentioned poor bedside manner physician) wanted to do the "stick." Instead of laying on my stomach and using fluoroscopy guidance, he wanted to do the traditional ("old school") blind stick. I would have really rather have had the neuroradiologist do it, but I didn't feel like I had a choice. No one asked me what I wanted and I certainly didn't assert myself because I didn't want to piss off anyone in charge of my care (i.e. aforementioned neurologist). It had been made clear to me by everyone involved that my case was very rare and Dr. H was the only physician around with any experience involving IIH (idiopathic intracranial hypotension). So, I just shut up and let him do the procedure. Again, I couldn't help but think about how ME, a doctor at U.AMS, didn't feel like I had any say in my healthcare. Imagine how many things are done to patients without their real consent or true knowledge of why/what is happening. Scary and ironic all at the same time. Dr. H comes storming into the room, admonishing Dr. VH because he got lost getting to the procedure room and "wasted his time." He came over to me, put me in the fetal position (which was 100x's more painful then laying on my stomach) and started feeling around my back. First, he numbed the space (bee sting my ass) and then he put the bigger needle in and started to withdraw fluid. All at once I felt hot and nauseated and was fighting the urge to pass out when he moved the needle again and OMG! Talk about pain! Sharp, shooting down my right leg and in my groin. I really thought I was going to be sick because the pain was so overwhelming. Then, they injected the dye. This time I screamed and jumped off of the table. It seemed like a bullet in my spine and an electric shock down both legs. It was sudden, sharp, searing, unexpected, and TERRIBLE. Luckily, Dr. VH took pity on me and essentially took over the procedure. After bringing me nothing but pain, Dr. H left and it was just us (Dr. VH, his nurse, and me). I rolled over and looked up at Dr. VH and he said, "just remember, I'm not the one who stuck you." This made us all laugh a little. Later I was told that the needle has been put in the wrong space and the dye had been injected into the wrong space. This resulted in the lower part of my spinal cord getting "lit up" and was the cause of a lot of pain. I also learned that Dr. H "skewered" my pudendal nerve, which caused considerable leg and groin pain for about a week. If you look up what the pudendal nerve innervates, it might make you squirm a little.
They wheeled me out of the room and into the CT scanner and then off to recovery to wait. The original plan was that they would scan my head and entire spine every 2 hours for 6-8 hours in hopes of finding the leak. Apparently, these leaks can be very tricky and Dr. VH said he had never found the leak with just one scan. After getting settled in recovery, Dr. VH came walking in, "I have good news and bad news." Shit. I knew I wasn't supposed to be seeing him so soon. Besides, didn't we have many more scans to do before the day was over? He continued, "Dr. H stuck you so many times and put so many holes in your dura that I can't see where the the leak is because the contrast dye is leaking through the holes he placed. So, we are going to have to do this all over again on Monday." The good news? "You get to go home." Oh, ok. On bedrest for the weekend and then we get to do it all over again. Of course I said, "next time you do all the sticking, right?"
They wheeled me out of the room and into the CT scanner and then off to recovery to wait. The original plan was that they would scan my head and entire spine every 2 hours for 6-8 hours in hopes of finding the leak. Apparently, these leaks can be very tricky and Dr. VH said he had never found the leak with just one scan. After getting settled in recovery, Dr. VH came walking in, "I have good news and bad news." Shit. I knew I wasn't supposed to be seeing him so soon. Besides, didn't we have many more scans to do before the day was over? He continued, "Dr. H stuck you so many times and put so many holes in your dura that I can't see where the the leak is because the contrast dye is leaking through the holes he placed. So, we are going to have to do this all over again on Monday." The good news? "You get to go home." Oh, ok. On bedrest for the weekend and then we get to do it all over again. Of course I said, "next time you do all the sticking, right?"
Everyone kept saying, "aren't you mad??? I'd be furious." Luckily, Dr. VH paused after he said, "I have good news and bad news." In that brief pause, I had enough time to think of all the potential "bad" news that could be on the way. Trust me, doing it again was a picnic compared to the things I was imagining.
I could point out the 10 billion times throughout this encounter that I was thinking of my patients and taking mental notes. When you are the one on the gurney you hear and see everything. The smallest things can make you comfortable and happy vs nervous and scared. The reality? It doesn't take much to tip the scale one way or another. These are the things I have to take home and remember when I am tired, frustrated, or hurried. My role as a physician puts me in a place to have a dramatic impact on a patient (regardless of the healthcare being administered). Just being human, taking time, smiling...these are the things that make the big difference. There are a lot of people that can give the right chemotherapy or order the right tests, that is not what makes the difference. That is not what makes a good doctor. I hope I never forget this.
Monday, October 19, 2009
The Other Side, part 1
This is the first of several posts surrounding our newest adventure. They call it "spontaneous intracranial hypotension." Yep, that is exactly what I said.
The headaches started slowly. They were different than any headache I had ever experienced (I don't usually have a lot of headaches and have no history of migraines, etc) which seemed a little strange. It started on a Monday. They were not that bad, just a little distracting. In describing them to my coworker I said, "it feels like the pressure is off in my head." The headaches were made worse when flexed my neck and they got worse as the day progressed. Interestingly, they went away after laying flat for about 30 minutes. I took I.buprofen, sinus medicine (even though I had no sinus symptoms), and tried to drink a lot of water. I had started a new diet so I thought that might be the culprit. As the week progressed, the headaches became worse. By Sunday, I was in pain. If I stood up, I hurt. If I was laying down, much better. Each day was like a ticking time bomb, I knew I only had so much time before I was going to have a lot of pain. I was barely making it through the day and was going to bed as soon as I hit the door. It was almost like my body was FORCING me to put my head down, it was the ONLY way to make the pain bearable. I had been talking to my PCP through all of this and had one trip to the ER in the middle of it all. Everyone was thinking spinal headaches without the usual preceding trauma (which is rare, but happens). By the following Wed my PCP had an appointment for me with a Neurologist. By the time I made it to his office, the pain was overwhelming. It was searing and felt like lightening through my neck and the back of my head. I was ready to jump off a building, I was hurting. I had been up all morning and was just barely making it by the time I got to the appointment. Thankfully, the woman at the front desk took mercy on me and let me go directly to the exam room and recline. The rest was kind of a blur. The neurologist came in and started examining me. He was rough and had a terrible bedside manner, none of which suprised me since I have known him since medical school (and NEVER liked him). But, he is good (smart) and the head of the department AND he was in my room immediately. Unfortunately, I couldn't quit crying. I was scared and in pain and my medical care was now in the hands of a man I never liked. It was one of those situations where you just can't stop crying, even though you really want to! I wanted to say, "I'm not one of those hysterical crazy women, something is really wrong here!"
After about a hour of questions and physical exam he says, "something is really wrong here. Either you have a tumor or a spinal leak. Are you here alone?" I was there alone because I had gone to work that day and had told Mere to stay home until I found out more, a decision I was regretting. I said, "Yes, but I can have someone here right away." "Your husband?" he asked. "Sure," was all I could manage. Then he said, "we are doing an urgent MRI of your brain. If there is no mass and signs of a leak then we will do a myelogram and then a blood patch or maybe surgery." Me, "how long am I going to be down?" Him, "no matter what this turns out to be, you are down for awhile." At this point in time, I was just to scared to ask anymore questions. Not to mention, I was still in a considerable amount of pain. Of course, my pager had been going off throughout my appointment (because that is just my luck). I called the chief fellow and tried to tell her what was going on and pass off my consults to her (bless her heart, I was crying so hard she could barely understand me).
Off to MRI we went. Now, I know how hard it is to get an urgent MRI. I know the buzz words that you have to use to make things happen so fast. I also know that none of them are good. After they got me settled in the hall on a gurney, it was time to wait. Mere was waiting for my mom to drive from Conway to watch Layne and then she would be there. After about 30 minutes, they moved me to another gurney and then the MRI. Now, I knew that some people got claustrophobic with MRIs and I knew that they were loud. However, I wasn't expecting to have my head put in a brace, earbuds shoved into my ears, and be in a tube with less than an inch around me in any given direction. The tech said as I went in, "it's gonna be loud, whatever you do, don't move. About 1/2 through the scan we are going to pull you out, start and IV, and give you some contrast dye then we will put you back in the scanner." Uhmm...ok. As I started to go into the scanner I could feel my heart speeding up and anxiety coming over me. For a brief moment I didn't think I could do it. Luckily, something (the cozmos, God, whatever) just came over me and I thought, I can relax and do this the easy way or I can totally freak out and delay this process. I shut my eyes and retreated into my own little world. While I was in the machine I couldn't help but wonder if we were going to be dealing with a tumor. It was scary. But, for the time being it was just me and the machine. No one could get to me, talk to me, or call me...I relaxed. I started to think of how patients must feel when they are getting scanned. Big, loud, cold machines and the ability to see all the bad stuff (like cancer) that can be hiding in our bodies. I was thinking of the woman with breast cancer and new onset back pain who gets put through the scanner looking for spinal mets. The young guy with melanoma and new headaches looking for brain mets. How terrified those people must be!
They pulled me out and tried to send me home. Nope, I knew I was supposed to wait to Dr. VH (the neuroradiologist). This was the first of many times that no one really knew where I was supposed to be, luckily, I did, but I fully realize that the average patient would have no clue. Phone calls were made and a few minutes later, he came around the corner. Dr. VH (we had never met before) came up to the gurney and said, "you definately have all the signs of a csf leak and low pressure. Now, we just have to find the leak." Thank God! No tumor. We talked for a few minutes and decided that since it was 4:30 in the afternoon that we would wait until the morning to start the process of finding the leak. I was given the option to be admitted but mostly just wanted to get to my bed, so they discharged me home with instructions to return the next day at 8am.
Saturday, August 22, 2009
Life Lessons on a Bike
Today we all went on a family bike ride. Syd is really getting good at riding without her training wheels, which makes the rides SO MUCH MORE enjoyable then they used to be! As we were riding along the river today, I realized that much of what I was saying to Syd applies to life.
1. Always keep both hands on the handlebars.
2. Look straight ahead, don't look behind or worry about the next hill. Concentrate on what is right in front of you.
3. Sometimes it is better to coast instead of peddle.
4. Faster is not always better.
5. Wear your helmet, it hurts less when you get knocked down (or run into a pole)!
6. When you fall, get right back up and on the bike.
7. Move over when other bikers want to pass you.
8. Pay attention.
9. Sometimes the wind in your hair is reward enough.
10. Relax, have fun, and stay calm if you feel like you are going to lose control.
Sunday, July 26, 2009
Strange
Last weekend I did a few shifts at an ER that I had not worked at in over a year. When I arrived on the first day, I noticed that the clerk had lost a considerable amount of weight since the last time I had seen her (~80 lbs).
Here is how our conversation went,
Me: "You look great! What did you do to lose all that weight."
She looks around sheepishly
One of the nurses, "tell her the truth"
Her, "I binge and purge"
Me, "No really, did you have weight loss surgery?"
Her: "No, I binge and purge"
Me not knowing what to say next, walked away to see a patient
A few minutes later, the said clerk went to get some food. She returned with a big (party size) bag of chips and a container of french onion dip. The nurse sitting next to me said, "she will sit there all day and then go throw it all up"
I was still a little suprised by the entire situation and thought maybe everyone was just being dramatic. But, sure enough I watched this poor girl eat ALL DAY LONG....constantly going to get more food and then off to the bathroom. It was the strangest thing I have seen in awhile.
And....all the nurses, techs, and NPs KNEW what was happening. This girl was completely open about it. The whole experience was sureal. I just felt terrible for this girl. Really, you could tell that her day revolved around food as an obsession/compulsion. I finally asked one of the nurses if anyone had really sat down with her and talked to her about the terrible consequences of her disease. The response? "We have all tried but she just doesn't seem to care."
I still can't get over it. The poor, poor girl!
Here is how our conversation went,
Me: "You look great! What did you do to lose all that weight."
She looks around sheepishly
One of the nurses, "tell her the truth"
Her, "I binge and purge"
Me, "No really, did you have weight loss surgery?"
Her: "No, I binge and purge"
Me not knowing what to say next, walked away to see a patient
A few minutes later, the said clerk went to get some food. She returned with a big (party size) bag of chips and a container of french onion dip. The nurse sitting next to me said, "she will sit there all day and then go throw it all up"
I was still a little suprised by the entire situation and thought maybe everyone was just being dramatic. But, sure enough I watched this poor girl eat ALL DAY LONG....constantly going to get more food and then off to the bathroom. It was the strangest thing I have seen in awhile.
And....all the nurses, techs, and NPs KNEW what was happening. This girl was completely open about it. The whole experience was sureal. I just felt terrible for this girl. Really, you could tell that her day revolved around food as an obsession/compulsion. I finally asked one of the nurses if anyone had really sat down with her and talked to her about the terrible consequences of her disease. The response? "We have all tried but she just doesn't seem to care."
I still can't get over it. The poor, poor girl!
Saturday, July 4, 2009
The Baby Bug?
Ok. I keep coming back to this. The baby thing. We are getting close to ramping up for our next (and last) IVF cycle. September is go time. Ahhh...the fridge will be filled with meds and our counters will have sharps containers just like the good ol' days. I'm excited and nervous and happy that I won't be the pin cushion this time. I know that Mere will be much better at this IVF stuff.
I really think I'm ok if we don't get blessed with another baby........but then I see a baby and......
But, I don't miss the sleepless nights and now Layne is getting out of diapers so our baby days could be behind us. That definately has its perks. And, with just 2 kids we would have more money and NEVER be out numbered. When it really comes down to it I want one more. Just one more, P-L-EASE!!!
The bottom line? I don't get to choose. It will happen or it won't. Either way, we are lucky.
I really think I'm ok if we don't get blessed with another baby........but then I see a baby and......
But, I don't miss the sleepless nights and now Layne is getting out of diapers so our baby days could be behind us. That definately has its perks. And, with just 2 kids we would have more money and NEVER be out numbered. When it really comes down to it I want one more. Just one more, P-L-EASE!!!
The bottom line? I don't get to choose. It will happen or it won't. Either way, we are lucky.
Friday, July 3, 2009
Nothing Much
I sit here trying to come up with something to blog about but I don't have any real cohesive ideas so I guess this will be a random thoughts kind of a post.
--I can't believe that Layne is almost potty trained. She just decided it was time and did it. No big deal, no fanfare, nothing. Just one day diapers and one day none. Even poopy on the potty! I'm pretty sure she is a genius.
--Syd will ride her bike without training wheels by the end of the week. I might have to get a little mommy dear-est about this....but I will. The deal I made with Mere? She teaches how to ride bikes and drive cars and I will do prom dresses, wedding planning, and other fun stuff.
--Someone just checked into the ER for right thumb nail pain with no known injury. Yes, I'm serious.
--I'm gaining weight. 10lbs since this time last year. This is not good. Not good at all. What am I doing to change this? Uhmmm......I'm hoping that God will strike me thin.
--I can't believe I am done with my 1st year of fellowship. Only 2 more years and I am TOTALLY done. This is VERY, VERY scary. I have a lot to learn in the next 2 years. Oh shit, I'm scared.
--I'm getting tired of the ER. Like, seriously super tired of it. I think change is on the horizon....more on that later (don't want to jinx anything).
OK....I have to go take care of the fingernail pain. Saving lives and taking names!!!!
--I can't believe that Layne is almost potty trained. She just decided it was time and did it. No big deal, no fanfare, nothing. Just one day diapers and one day none. Even poopy on the potty! I'm pretty sure she is a genius.
--Syd will ride her bike without training wheels by the end of the week. I might have to get a little mommy dear-est about this....but I will. The deal I made with Mere? She teaches how to ride bikes and drive cars and I will do prom dresses, wedding planning, and other fun stuff.
--Someone just checked into the ER for right thumb nail pain with no known injury. Yes, I'm serious.
--I'm gaining weight. 10lbs since this time last year. This is not good. Not good at all. What am I doing to change this? Uhmmm......I'm hoping that God will strike me thin.
--I can't believe I am done with my 1st year of fellowship. Only 2 more years and I am TOTALLY done. This is VERY, VERY scary. I have a lot to learn in the next 2 years. Oh shit, I'm scared.
--I'm getting tired of the ER. Like, seriously super tired of it. I think change is on the horizon....more on that later (don't want to jinx anything).
OK....I have to go take care of the fingernail pain. Saving lives and taking names!!!!
Wednesday, June 17, 2009
Republican !?!??
Ok. I think I'm done. I think I'm going to have to be a Republican. If I'm not going to have rights, then I might as well keep my money.
This man that I helped elect......what has he done for me?
Higher taxes? check
Trying to cut healthcare spending (read: less reimbursement for doctors)? check
Equal rights for my family? Any rights for my family? BIG FAT NO!!!!!!
Have you read the brief that Obama ordered the Justice Department to write in defense of DOMA? It is really something else. Among other things, DOMA is praised as a good law because it saves the federal government money by not paying out marriage benefits to same sex couples. One part of the brief reads,
“DOMA ensures that evolving understandings of the institution of marriage at the State level do not place greater financial and administrative obligations on federal and state benefits programs. Preserving scarce government resources—and deciding to extend benefits incrementally—are well-recognized legitimate interests under rational-basis review.”
So, by denying me rights the government is saving money. Wanna pass some of that savings on to me??
It goes on and on........the end result? Another politician who changes their tune once in office. This time it is just extra insulting given the fact that Obama has spoken out against DOMA for years.
I can think of a lot of ways to save the federal government money and not one of them involves discrimination. I get to see people abusing the system day in and day out.....who is paying for this? I am! We are! But, we sure don't want to be a drain on the federal government's resources. It is ok to collect disability payments and suck up medicaid benefits WHILE abusing drugs and working the system......but PLEASE don't let me get married because this might tax our resources!!!
I think I have crossed over.........
Sunday, May 24, 2009
Really??
I remember the second she was born knowing that all was right in this world. How could anyone be more perfect? How could anyone question the existence of God when something this amazing can happen? She was/is a miracle (and so is her sister) from the start. I can vividly remember the second she came out of Mere's stomach, so how is it that she is done with first grade? If my memory is so clear, then how could so much time have passed?
At the end of first grade I find myself with a little girl who is rapidly maturing into what will one day be a unique, loving, smart, beautiful woman. She is reading chapter books ALL BY HERSELF and moving through them at the speed of light. She has strong legs from riding and strong arms from swimming. She loves her sister. She is her own mix of girlie girl and tomboy, spending hours playing dinosaurs while wearing her pink dress up outfit. She is patient, insightful, thoughtful, sensitive, and loving. I can't believe we have a second grader. The time is flying......I just want to soak up as much of it as I can.
Wanna know what is even crazier? Layne starts the two and a half class in the fall........
Monday, May 18, 2009
The Grass Is ALWAYS Greener.......
What a weekend!
Friday: Get Syd off to school, set Layne up with a sitter, go to work. After work, off to Pinnacle State Park for a school wide picnic with all of Syd's peeps. Back home, bath, bed.
Saturday: Up early for a 9am birthday party, farmer's market and lunch with Layne (Syd went to a friend's house for the afternoon), home. Syd had a friend over for a sleepover and I had a few people over for food and adult company. Bed....late!!
Sunday: Up and off to church, Greek Food Festival, pedicure and manicure with Syd, potluck, home, bath, and bed (for ALL of us!).
It was busy and SO MUCH fun!!!!! While I had a few hours with Layne on Saturday I found myself getting all weepy thinking about how much I LOVE these girlies. Of course, then I start to regret becoming a doctor......maybe I should have been a stay at home mom.....think of all I'm missing. There is so much joy to be found with my girls and I'm in a hospital somewhere.....seems kinda crazy. I am reminded that our weekend would have been less then fun if we were not able to afford food, which is what would happen if I didn't work!
In the end, I know that we have struck a great balance. Mere and I are partners and that is really an amazing thing. Somehow I managed to wake up in the middle of the super cool life and I'm so grateful for that. I'm grateful for ALL that Mere does to keep our house running and our girls happy. I'm grateful that she takes out the trash, balances the checkbook, pays the bills, and runs from swimming lessons to gymnastics to horse back riding all in a days work. Most of all I'm grateful that I have 2 happy, healthy, well adjusted girlies and a wife that rocks.
Now COME HOME!!!!!!!
Saturday, April 11, 2009
ER Manual
I wish I could hand this out to ER patients before seeing them. But, I can't for obvious reasons so I will write my dream patient manual here and move on to greener pastures.
If your child is sick, alternate tylenol and motrin every 2 hours. When their temp comes back....keep alternating. If I had a penny for everytime I said this I would be a millionare.
There is no magic pill/cure for viruses. I'm sorry you feel bad, but I don't have an answer. If I did, I wouldn't be working in the ER.....I would be a millionare.
Rashes are not emergencies.
If you have COPD (chronic obstructive pulmonary disease) then don't smoke. This includes pot.
If you cannot get yourself water/food and you are in a nursing home, you will get dehydrated. Very, very dehydrated.
Back pain for 3 months is not an emergency.
Nothing that has been going on for 3 months is an emergency.
I am not a dentist. The only way to cure a tooth abscess is to see a dentist. If you don't have dental insurance, I am sorry but I'm still not a dentist.
There is not much that Ibuprofen can't make better.
Babies cry. That is what they do. I know it is hard but I can't fix it.
If you have seen a billizion doctors for a particular problem, then I am probably not going to be able to fix it on a Saturday afternoon in the ER.
Migraine headaches suck. I KNOW they hurt. I'm still not going to give you narcotics. Sorry.
If you are drunk, please don't come to my ER. PLEASE stay home. If you see someone who is drunk, don't call an ambulance and have them brought to the ER.
You are not suicidal if you took 5 pills and called your friend, mother, sister, etc. You are also not suicidal if you took 5 pills and called the ambulance.
Alternate tylenol and motrin every 2 hours
Alternate tylenol and motrin every 2 hours
Alternate tylenol and motrin every 2 hours!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I feel better now. Much, much better.
If your child is sick, alternate tylenol and motrin every 2 hours. When their temp comes back....keep alternating. If I had a penny for everytime I said this I would be a millionare.
There is no magic pill/cure for viruses. I'm sorry you feel bad, but I don't have an answer. If I did, I wouldn't be working in the ER.....I would be a millionare.
Rashes are not emergencies.
If you have COPD (chronic obstructive pulmonary disease) then don't smoke. This includes pot.
If you cannot get yourself water/food and you are in a nursing home, you will get dehydrated. Very, very dehydrated.
Back pain for 3 months is not an emergency.
Nothing that has been going on for 3 months is an emergency.
I am not a dentist. The only way to cure a tooth abscess is to see a dentist. If you don't have dental insurance, I am sorry but I'm still not a dentist.
There is not much that Ibuprofen can't make better.
Babies cry. That is what they do. I know it is hard but I can't fix it.
If you have seen a billizion doctors for a particular problem, then I am probably not going to be able to fix it on a Saturday afternoon in the ER.
Migraine headaches suck. I KNOW they hurt. I'm still not going to give you narcotics. Sorry.
If you are drunk, please don't come to my ER. PLEASE stay home. If you see someone who is drunk, don't call an ambulance and have them brought to the ER.
You are not suicidal if you took 5 pills and called your friend, mother, sister, etc. You are also not suicidal if you took 5 pills and called the ambulance.
Alternate tylenol and motrin every 2 hours
Alternate tylenol and motrin every 2 hours
Alternate tylenol and motrin every 2 hours!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I feel better now. Much, much better.
Saturday, March 21, 2009
Calling All Our Peeps!!
We made an executive decision this morning. One we probably shouldn't make but ce-la-vie! We are going on the R Family Vacations Alaska Cruise.....yeah!!!!!!! We are going to spend a few days in Seattle before the actual cruise. So, if any of our blogger peeps (hint, hint...Arcane Matters...etc) are going to be on board let us know. It would be so AWESOME to meet some of you guys. I don't think any of my regular readers live in Seattle, but, if I'm wrong...let me know.
I am SO excited. We were watching the video online this morning and Mere is on it (we were on the 1st cruise)....how cool. Of course, it made us all gushy and we remembered what an amazing time we had 5 years ago. Next thing you know, I'm looking up flights.
So....come one guys.....book your rooms!
Wednesday, March 4, 2009
Let Go and Let God????
Ok.....I have never had any intention of making this a TTC blog....but....it is what it is, right? We have been on this stupid roller coaster for 2 years!*&% What? How could that be??? Oh, but it is. Meanwhile, everyone around us is either pregnant or has recently delivered. It is getting sort of cruel. Things I MUST remember
1. I am not in control. I am not in control. I am not in control
2. If it is meant to be, it will happen
3. This is really none of my business. If God wants this then it will be, if not then it won't
4. I have 2 beautiful, perfect, wonderful baby girls that I am so fortunate to know and love
5. I cannot control this, I cannot control this, I CANNOT control this!!!!!!!
6. All babies/pregnancies are blessings....even if it is not mine
7. Patience, patience, patience
Keep all your parts crossed as we start on cycle ???? ( I lost count a LONG time ago)
1. I am not in control. I am not in control. I am not in control
2. If it is meant to be, it will happen
3. This is really none of my business. If God wants this then it will be, if not then it won't
4. I have 2 beautiful, perfect, wonderful baby girls that I am so fortunate to know and love
5. I cannot control this, I cannot control this, I CANNOT control this!!!!!!!
6. All babies/pregnancies are blessings....even if it is not mine
7. Patience, patience, patience
Keep all your parts crossed as we start on cycle ???? ( I lost count a LONG time ago)
Monday, February 16, 2009
The Other Ones
Layne taking flight on Mona airlines.
The love bug. Mona and the girls worked hard on this one!
Mere getting some sweet love from Ralphie. See honey .... chihuahua's rock!
Mommy tracing Layne the dolphin fairy (don't ask).
A picture that Mona took of the pretty girl. Seriously, how stinking cute can one kid be?
Mona and Syd complete master- piece #1. A dinosaur with an orange bodysuit.
My angels hard at work.
Mona and Layne perfecting their art.
Time to make cookies!
Carole and the girls busy decorating cookies.
Are they done yet?
Uhmmmm...can't wait to eat some of that yummy dye.
Can I have some cookie with my icing? You know you want one!
Carole and the girls in the middle of a baking frenzy.
Carole and me chillin'
Sunday morning DS games. Don't they look so serious?
You know the other ones....the ones without kids. The people who have a house untouched by little hands. The place that you go when you are always a little edgy about what your kids are going to get into, what mess they will make, and trouble they will find. It is hard to totally exhale. But not at Carole and Mona's house. Carole and Mona are really close friends of ours (really more like family) who have 4 legged children but not 2 legged gooses like us. We decided to have a sleepover at their house on Valentine's day, kids and all. We had a blast! The girls got to decorate their driveway, bake cookies, and just have fun. It was so relaxing and great. The best part? No stress. The girls had free reign of the house without any worry about breaking things, etc. We are so lucky. Oh....and I got some great chihuahua lovin'
Subscribe to:
Posts (Atom)