Friday, November 26, 2010

Super Happy Black Friday

Thankful is DEFINITELY the way I would describe the way I feel today. There are a million wonderful things swirling around in my little brain and full heart today. Yesterday was PERFECT. Spent with family and friends. Spent upright. My pager went off right as we sat down to eat and I was ALMOST irritated. Because I'm a big important doctor and how DARE you bother me just as I'm about to eat this delicious plate of hot food that might be cold when I get done taking care of the problem that you are paging me for. Damn! How quickly I forget. Nope. I am DAMN lucky to be sitting here, eating, and ABLE to answer a page. So, get up and happily answer it and that is why we have microwaves! Life is perfect and I am LUCKY. If I ever need proof, I'll just refer to my blog. This is what I wrote on this very day last year (and let me tell you, I did not feel lucky or grateful or happy or anything but scared, sad, and dumbfounded). I still can't even read through this entire post but I know what it says,

"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 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."

Hope everyone had a great Thanksgiving!!!

Friday, October 29, 2010


So, Mere and I were talking about this last night and she said, "put it on your blog and get some opinions." Sounds like a GREAT idea.

When I was sick we were constantly (and still are) amazed at the kindness and generosity of the people in our life. But one particular incident was really mind blowing. About 1/2 way through my illness, when things were really getting tough and money was non-existent we got a card in the mail with a check for $500 and a REALLY nice message. You could really feel the love and genuine concern in what was written in the card, it was AMAZING and the money was life saving. The gift came from a couple that I went through med school and residency with. It was such a kind and generous gesture that I still get goosebumps when I think about it. They are in fellowship (read = not making a lot of money) and have 2 young children and $500 is a BIG deal to them (and me). Not to mention, I know that they are very money conscious...they are savers, not spenders.

When we were residents B (the wife) and I spent a lot of time together and that is really when our friendship started. But, we are in different fellowships and we all have young kids and busy lives so over the last few years I haven't seen a lot of B or her husband (mostly at Bday parties, etc). She had heard through the grapevine about me being sick. I will never forget opening that card, it brings me to tears as I write this. It was one of those "random" acts of kindness that makes you want to be a better person. Mere made them some of her super cool lunch bags, I wrote a thank you note, and she delivered them to their house. It was all we could do at the time.

Which brings me to my question. Now I'm better and we could send them a check for $500, but should we? It was a gift and I do not want to offend them. Our philosophy through all of this is to pay it forward (and we have been doing that) but for some reason this question keeps coming back to me. I was thinking of maybe sending them a nice gift card when they graduate from fellowship or something like that.

The reason this is coming up now is that I got a really nice text from B yesterday. She had heard about me leaving fellowship and had some super nice and supportive things to say. She also mentioned the lunch sacks and how much she loves them. I feel like we will be life long friends. The kind that might not talk or see each other a lot but are always there. I am so grateful for B and so lucky to have her in my life.

What do you think?

Friday, October 15, 2010

Crazy and Happy

Heme/Onc (blood and cancer) fellowships are competitive. As far as medicine subspecialities go, they are one of the harder programs to get into. I still remember how relieved I was the day I "matched" into Heme/Onc in Little Rock. I thought it was exactly what I wanted. And, that was the last time I can remember being excited about my career choice. I've never loved this fellowship. But, medical training is not meant to be fun so I have just trudged along feeling like it's probably the training and not the content that I don't like. From the start, I have talked about leaving but I was scared to walk away from such valuable training. Before I got sick I was just starting to get into a little groove and feeling like maybe it wasn't so bad...this Heme/Onc thing...I could do it and it would be fine.

But, then I got sick. I'm learning that such a life changing experience is, well, life changing. Fine is not how I want to describe my work life. I'm not the same person and I'm definately not the same doctor. I thought that after the fear of thinking I might not ever get the priviledge of being a doctor, I would relish coming back to fellowship. I mean, this time last year I was PRAYING to be able to complete my training. At one point while I was out there was a question that I might have to completely redo my fellowship because I had missed so many months in a row. I had decided that I would quit if that was the case. When my program director called to tell me that I wouldn't have to start over and could pick up where I left gut reaction was disappointment. I guess that should have been enough, but I just kept thinking I would start to like it more.

Since coming back to work...I have been miserable. At first I was just so exhausted that getting through the day was my only focus. But even as I get better and stronger, I'm still not enjoying my work. I have been unsure of my career choice from the start and the deeper I go, the more unsure I get. But, I kept on....I mean, people don't walk away from Heme/Onc would have to be crazy. I even started looking for jobs and I found that a career in Heme/Onc is pretty tough. You either hang out at the V.A and have a great quality of life but make not a lot of money (I could make more as a primary care doc) or you go into private practice, work like a dog, and make lots of money. The more I researched and interviewed and talked to practicing docs...the more I realized the reality of my options. I was nearing the end of the tunnel and I couldn't see a light. And, I was not loving my job (not really even liking it). So, what to do?

Then, my program director called me into his office. He said lots of things...some true, some not. Bottom line...he wanted to know if I was committed to this program. He said things like, "when your on, your on but you aren't on as much anymore." The conversation was long and when I walked out of his office I really started to consider my choices. It is one thing to have an internal struggle but obviously my struggle was not so internal anymore. For the 1st time I REALLY thought about leaving. And so the inner turmoil began. Of course, we were already scheduled to leave for Boston for my board review course (in Heme/Onc) so we went. I tried to forget about everything and just focus on the course. I did talk to a few people about hospitalist and primary care options, as well as, private Heme/Onc options. But, mostly I focused on having fun, learning, and trying to relax. I prayed about it and really tried to let it go..which I was only moderately successful at.

I could finish out the remaining 12-15 months of my fellowship or jump ship. My logic in staying was that I only have a little over a year left and I didn't have to practice Heme/Onc when I was done but I would have to option if I wanted it. But, it is not an easy year. I missed a LOT last year so this would be a year of back to back service (read = hard) months with plenty of call. Basically, it would be the hardest year of my fellowship yet. Not to mention the reading and studying I would need to do to get caught up and ready for full fledged practice. A challenge I could 100% take on....but did I want to? For what? I job I don't really like that much? More money?

At some point in time I just became really obvious that I need to leave. I may regret it later but I can't live my life worrying about regret. I have to do what makes me happy today (and in the near future). I was talking to a friend about it and she said, "what do you really want to do?" and I said (without any thought at all and almost instantly), "I want to take care of dying people." That also got me thinking about palliative care (end of life care/hospice) and why I ever chose Heme/Onc in the first place. Really, end of life care is why I gravitated towards Heme/Onc and it has always been where I excel. There is something so satisfying about helping a patient and their family at the end of life. I know it sounds grim, but it really is so amazing to be a part of the dying process and help make it a peaceful experience.

So...I resigned this week. I took a job working as a Hospitalist (taking care of pts in the hospital) and as a palliative care physician at a local hospital. The work is satisfying (I hope), the hours are good, and the pay is nice. What more could I ask for? Now I just have to make it out of here.......

When I resigned my program director cried. He tried really hard to talk me out of it and in the end made me an offer I couldn't refuse. He offered to relieve me of Heme/Onc duties and let me go do 2 months of palliative care with our palliative care attendings/team. The job I was offered was more than happy to let me wait until Jan before starting, so I accepted the offer to stay for 2 more months. I felt like it was really generous of him to make me such a deal. Of course, today I found out why he made me the offer. He is hoping I will change my mind and stay. He is hoping that in the next 2 months he (or someone else)can convince me to stay. I also found out that he approached a few people and specifically asked them to talk me out of leaving. Which explains the constant onslaught of questions, being told I'm crazy, and me repeating myself over and over and over.....

We will see what the next 2 months holds. I'm done worrying about it. I'm just going to do what fits for me, whatever that might me crazy (and happy).

Sunday, October 10, 2010

Taste of T Street

I complained and bitched and bitched and complained. It took A LOT of her time. I mean, A LOT! There were meetings, more meetings, and more meetings. Let's not forget the last week of her being gone and busy when she was home. I'm not built to do it all. I think I would be a pretty good stay at home mom and I know I'm good at being the working parent (which is what I prefer) but for those of you mothers who do it hat is off to you. Working full time and being a the main parent is not something I enjoy. Not even for a few days. It makes me cranky. But, I digress....

When Mere told me she was going to take on the co chair position for a huge fundraiser for our daughters' school, I was less than thrilled. She was already working full time, which has been a HUGE adjustment, and now she was going to do this to? It all started when the principal of our school called Mere this summer and asked her to come to the school for a meeting. Apparently, she had been at a big fundraising event for another private school and decided we should do the same. No cookie sales, wrapping paper, or chocolates this year. Nope, just one big bang of a fundraiser and that would be it. She also hoped to create a foundation so that our school would be able to give out scholarships, etc. It was VERY ambitious. They only had 5 months to plan it. I'm not going to lie, when she first told me about what they were planning, I was skeptical. BIG plans, 5 months, and a bunch of newbies (except for the event planner that they hired). The plans? Booths run by parents (volunteers only) for food, a HUGE children's area (games, petting zoo, etc), a stage with live entertainment, a killer silent auction, a live art auction (art work done by the kids and framed), and much more.

Well, it was INCREDIBLE! I should have known that the parents and teachers would come together to make it an amazing event. Our girls go to the coolest school ever....there is always so much love and parental involvement. Seeing it all come together was such a wonderful moment. I get tears in my eyes just thinking about it. It was such an overwhelming success (and I don't even know how much money we raised yet). It is such a honor to be part of the community at our school, we are so blessed.

Most of all, I am proud of my wife. She endured a lot and worked her butt off and it payed off BIG time. Everyone kept coming up to me and telling me how much they love Mere and what a great job she had done. There were a lot of parents that I didn't know who were really involved....I kept introducing myself as Mere's wife and they would be like...."oh yeah! HI! It's so great to meet you Jess, etc, etc." They all just love her. But, what's not to love?

I am glad it is over and happy to have my wife back. I'm sure she will be putting up pics on her site, once she tracks some down (she was WAY to busy to take pics). Oh yeah, you might have to remind of this post next year when she is the CHAIR of the event!

Sunday, September 12, 2010

It's About Time

This has been such a wonderful week. I have relished EVERY minute of it. From late nights with a coughing, crying baby to being thrown up on, to a night in a very NOT private room at the Children's Hospital curled up with a restless 3 year old. I'm serious, it has been totally wonderful. So, before you guys come running over here to make sure I haven't totally lost it, let me explain.

From the start Mere was the apple of Layne's eye. Mere stayed home with her and breast fed exclusively, while I worked 100+ hrs/wk. Not to mention the fact that I became VERY self absorbed....getting caught up in depression, infertility woes, and other stuff that just made me unavailable even when I was home. All of this together meant that Layne has grown up with Mere as her primary care giver. Don't get me wrong, she is very much my child and I LOVE her with everything I have and she loves me. But, we have just never had the same time together that I had with Syd when she was a baby/toddler/preschooler. All of that started to change when I got sick. Layne and I spent hours together reading books, coloring, and hanging out while I kept my post on the couch. I realized during that time how much Layne craved my attention and needed time with me and vice versa. Those long days on the couch really led to some wonderful bonding time and all of a sudden Mere was not the one that Layne ran to when she needed comforting. I LOVE the way our relationship has grown over the last is truly one of the blessings that came out of being sick.

Flash forward to this week. Layne had to have her tonsils/adenoids taken out and tubes in her ears. The ENT doc told us to expect a 2 wk recovery which means no school for Layne. Last year I would have taken off a day from work for the surgery and gone straight to work from the hospital the next morning (if all was ok). Mere wasn't working so she would have been the one at home nursing our little patient back to health. But, it is not last year. THIS year Mere is working and I am on a research month (read...easy month) so I only had to do a little tweaking to arrange a week off from work. So, I was the one who stayed home and took care of Layne, I was the one who slept with her, and I was the one she cuddled up to when she wasn't feeling good. And, I LOVED every minute of it. I really, really did. What a wonderful experience (for me, probably not so much her).

Tomorrow I head back to work and she is going to spend the day with a friend (who will treat her like her own) getting spoiled and loved. I'm bummed because I wish I could take another week off to spend with her. It may seem silly, but I will always remember our time together over the last few days when she really needed her mommy. Of course, the truth is....I need her!

Sunday, July 25, 2010

A Long Time

Ok. So I know it has been a LONG time since my last post. Thankfully, life got in the way of me posting. YEAH! That means I actually have a life again. Pretty much everyone in my life knows that all is good, but, I want this all documented...even the end (I hope!) so I don't ever forget.

The last trip to LA was actually, GASP, fun! See Mere's blog for all the details. We drove with the girls, did Disneyland, and even the Grand Canyon! The best part of the entire trip....a NORMAL myelogram. The doctor told me to go home, wean off all of my meds, and work on getting back to life. That is exactly what I have done and it has been great. We have had a fun and busy summer. Am I fixed forever? Who knows! But, it doesn't matter. Today I am happy, healthy, and whole which is all that matters.

Oh yeah, and thank GOD for all of our amazing friends and family. We are so blessed. I think I am the luckiest person I know!!!

Wednesday, April 21, 2010

Gratitude Post

Yesterday was great. It was really a special birthday. I'm not sure why, but I was just so filled with gratitude and happiness. I know I have another procedure around the corner, but that didn't stop me from being happy. How awesome is that?

After waking up to a special coffee and the coolest gift ever (read below), I got to go spend time with some friends. We went to a yummy lunch and had a lot of fun. Then I came home to rest for awhile because I had been up for several hours. When the family got home we all went to dinner with my mom, sister, BIL, and close family friends. We finished the night up with cake at our house. I got some really nice gifts (including a book about poodles that I am so excited to read!) and had a lot of fun.

While everyone was sleeping last night, I broke out the book of my first year of blogging. It kind of makes me sad. In 2008 I worked like a maniac. I NEVER saw my family, except for vacations. Almost every blog I wrote, I wrote while I was at work in the ER. It was a time when I worked all day, came home for 20 minutes, changed clothes, drove to small town AR (2 hrs away), worked a 12 hr shift, drove home and went to work all day. I would be home a few nights a week but I would be EXHAUSTED. Most weekends found me back in small town ER working. I always found a way to justify it. I had a horrible time saying no. Every time they called me and threw more money my way I was in my car, ready to work. We made a lot of money that year. I missed a year with my family. The money wasn't worth it. How much is a year away from your family worth? It is not something you can put a price tag on, but I did. Now I spend all my time with my family. In fact, we are only apart when they are busy at school and work. Or when Mere and I are traveling to LA for treatment. I have a feeling that is why I felt so happy and blessed yesterday. I had 2008 looming in my mind. A year wasted.

I had already slowed down a lot before I got sick. I had quit small town ER and started a local moonlighting gig that NEVER required a night away from the family. I was restructuring and already getting a lot more time with my girls. However, I was no where near the grinding halt that I have been at for the last 6 months. This year I have spent countless hours reading to Layne and Syd, listening to their days, watching them play outside, and just being together. A far cry from 2008. We don't have any money, but we are together and making it work. I didn't want this path for myself or my family, but I am so grateful that we are all here together. I think I should quit now before this starts sounding like a country song.

Tuesday, April 20, 2010

Happy Birthday To Me

What does everyone want for their b-day? Diamonds? Money? Clothes? No, what everyone wants is a blood patch! Well, try to not be to jealous because that is what I am getting. Eat your hearts out peeps. Ok. Seriously, yes I am still leaking. I have been bad about updates because I wanted a plan before I got on the blog. Well, now I have one. Mere and I leave Monday for sunny LA. Tuesday is MRI and appointment with Dr.S, and Wed is blood patch. Thursday we fly home. Is this it? I have NO IDEA. What I do surgery for me for at least another month. I am willing to try his super special large volume blood patch and PRAY beyond PRAYING that is works. But, if it doesn't, I'm holding on surgery until June. That little voice in my head is just telling me that surgery is not a great idea right now.

April has been good. I am managing pain with the help of an awesome palliative care doctor and can be up for considerable periods of time with bearable pain. I haven't gone back to work yet but I'm going to try in May. We will see. I am not overly hopeful that I will make it an entire day, but there is only one way to find out! I am off of the cane and the walker and discharged from physical therapy. My right leg is still pretty weak but I'm the only one who can tell. We have actually been able to do things as a family this month....picnics, bday parties, gathering at friends' has been great. Even though I'm still not better, I am feeling more normal than I have in 6 months. I'm not ready to trade that for the excruciating pain of surgery and recovery. I just can't do it right now. Oh yeah, and I'm driving again!!!!!

So, onward and upward. I pray that 32 is better than 31. I don't need perfection, I just want to be restored to health again. Keep praying for us because we still need it!

Oh yeah, and guess what my awesome wife got me for my bday? The first year of my blog made into a book and a S.tarbucks coffee waiting for me when I woke up (a luxury that we can no longer afford). The book IS AWESOME and AMAZING and WONDERFUL. It just proves that the best gifts aren't the expensive ones. I love you Mere.

Below is a picture of the book. Pretty cool, huh?

Saturday, March 13, 2010

LA Times

Each time I wake up from surgery, it hurts. There is always pain. This time it was different. Pain is an understatement. It felt like a board had been wedged into my upper back and ANY movement made the pain a million times worse. I don't really know how to describe it besides overwhelming. I just kept pressing the little green button that pumped morphine into my veins and took as many pills as I was allowed. I spent a lot of time crying like a baby.....mostly because of pain but also because of frustration. When you can't do ANYTHING by yourself and doing ANYTHING hurts it just sucks.

The week had begun with the scheduled myelogram. By the time I had the myelogram I had convinced myself that it was all in my head. My leaking was over and I was just crazy. I was expecting the myelogram to be normal, I really, really was. There was a lot of confusion on the morning of the myelogram that resulted in Tommie chasing me all over the hospital while lugging 2 suitcases and my purse. By the time the myelogram was over, we were both exhausted. Luckily, this myelogram was WAY better than the others. They did not sedate me to prevent seizures so the initial sticks hurt (as usual) but nothing to crazy. They used a lighter dye so when they injected it, the pain was minimal (it is usually the worst part). I sat up afterwards so that the dye would drain away from my brain and I was SUPER hydrated. Not long after the procedure, they had us in a room. We settled in and watched A.merican Idol. I felt good. Normally myelograms wipe me out, but not this time. It was about 9pm that the neurosurgery resident (Tommie named him cutie) came in to let me know that they did find another leak and that I would be having surgery the next morning. The next morning Dr. S came in and told me that I had an anterior leak in the T4/T5 region. The plan was so go into my back, remove several discs, saw away at some bone, and access my dura to find the leak. Once the leak was isolated, Dr. S would patch it and then Dr. A (the other neurosurgeon) would put a titatinium plate along my spine to stabilize the area where bone and discs had been removed. Dr. S went on to tell me that this surgery would be significantly more painful and have a longer recovery than the previous surgeries. The surgery was on a Wed and Dr. S made it clear that I would likely not being going home until the following week (I was expecting to be home by Sunday).

The next morning I was wheeled into preop before the surgery. The anethesiologist told me I would wake up in pain but that they would be there and would do everything possible to manage my pain. He said, "you have been on narcotics for awhile, right?" I said, "yes." He said, "you must be pretty tolerant." Me, "yes." He turned to his resident and said, "why don't we give her 20mg of morphine and 10mg of IV methadone?" Me, "uhmm....that sounds like a lot, can we just start with the methadone?" He then proceeded to give me IV methadone. I don't remember much after that.....just that I really didn't care about ANYTHING and the room was hazy. The next thing I knew, I woke up in recovery and IN PAIN.

I was wheeled back into my room and SHOCKED to find out that it was 8pm. The surgery was supposed to take 4 hours but it took more like 8 hours....yikes! I was also suprised to hear that I had a large anterior thoracic leak and they had operated from T2-T9, leaving a very large plate in my back. The parade of surgeons, nurses, and therapists that came into my room over the next week all commented on how big of a surgery I had undergone. I really had no idea it was going to be so major. Or that the recovery would be so long. The first 2 nights were horrible. I had to lay flat (but I could be on my side). The nurses had to turn me every few hours and prop pillows all around me in an effort to find a comfortable position. It didn't matter, I just could not get comfortable. I learned about sponge baths, total helplessness, and humility in ways I could have never imagined. Poor Tommie tried to help but there was nothing anyone could do to make it better.

To top it all off, the first 48 hours after surgery I had a fever up to 104 and was hypotensive (low blood pressure) and tachycardic (fast heart rate). In came the Internal Medicine doctor and Infectious Disease specialist. I was started on antibiotics for a presumed sinus infection and ear infection.

I learned that nurses really need to get educated about pain. It seemed like every other nurse was afraid to give me my pain meds as prescribed because they were afraid it was to much. Hello...the pain regimen was prescribed by a very experienced pain team! After the 1st night I learned that the pain team was available 24/7 (despite what the nurses led me to believe) and would adjust my meds anytime. The pain team was incredible. But, from them to the nurses things tended to get lost in translation. The nurses also had a really hard time with the PCA (patient controlled anethesia). It must be really difficult to operate because it was a problem for every shift. One night I kept telling Tommie that the PCA was not working. No matter how much I pushed it, it didn't seem to be helping. I asked the nurses to check the PCA...2 different nurses came in a checked. Everything was fine. Ok. About a hour later, the pain team nurse came in and checked my settings. I had been put on a setting of 0.6mg/hr instead of 6mg/hr and my lockout was set at 0.3mg/8 minutes instead of 3mg/8 wonder it didn't seem to be working! The entire experience was eye opening for Tommie and me.

Don't get me wrong, there were also good things. I had a lot of great nurses and all of the doctors were AMAZING. But, the little things really do matter. For example, closing the curtain in front of the door during a sponge bath so that when people walk in the door they don't see you laying completely naked in the bed. I always appreciated the nurses that took into account shift change and checked on you before it started. I know Tommie and Mere appreciated the nurses and techs that were quiet at night.

After a few nights, it became clear that I would be in the hospital well past Sunday. On Friday, Tommie called her mom and found out that she was sick. She had taken to her bed and was just not doing well at all. Since Tommie is all that her mom has, she really needed to get back to LR to take care of her. So we arranged for Mere to come in on Sat and Tommie to leave. The girls stayed at our house with my mom. Of course, she was threatened with her life if she did anything with our house!

In the few hours that I was alone (Tommie was on her way home and Mere was on her way to LA), they let me get out of bed. A PT (physical therapist) came and put a walker in front of me. I laughed....I don't need a walker! So, I stood up and promptly fell down (the therapist was there to catch me). My right leg had no strength and I couldn't really tell where it was in space. I also got shooting pains down both my legs when I flexed a the waist. The therapist managed to get me up with the walker and we walked a few feet before I couldn't do anymore. I was so frustrated and a little scared. They had also taken the foley catheter out and I found that I couldn't go to the bathroom. Great. My legs don't work and my bladder doesn't work. Not looking good for the home team. Dr. S ordered high dose steroids and scans to see what was happening. Now I had a physiatrist (physical medicine and rehabilitation doctor) and urologist added to the mix of specialists trying to put me back together. Mere arrived not long after the PT left so she was there for the onslaught of new doctors and tests.

The next few days was spent with me trying to get up and around more. Mere helped me shower and I tried to sit in a chair for a few hours/day. I was starting to feel better. My fever was long gone and my pain was getting better. I was off of the PCA and managing well with oral meds. The MRI had not showed much and I was getting a little better with the high dose steroids. The physiatrist wanted me to go to inpatient rehab in California. I opted a big fat NO on that one but agreed to do outpatient therapy in Little Rock. I spent the day on the phone finding out the best place for spinal cord injuries in LR and working out the details of what I needed to do to get started. We were hoping to go home on Wed or Thurs.

Then, the results of the CT scan came. There was a screw that was protruding into my spinal canal on the left side (the right side was the one with the problem). Dr. S didn't think that the screw was causing my problems but was worried that it could become problematic with time. He felt that the best course of action was to go in and remove the screw. The surgery would be much smaller than the previous one but the pain and recovery would start all over again. Cutting into all the muscles of the back and retracting them during surgery causes a lot of post op pain. Ughhh!!!!

So, I went back to the OR on Wed. The surgery was quick and uneventful. The next 2 days were spent in severe pain, with the PCA, in bed, and generally miserable. On day 3, I was able to start getting up, showering, etc. I was PCA free and the foley catheter was out again. All the things needed to start talking about a discharge date. Somewhere along the line, my liver function tests got out of whack so I was got to have an ultrasound on my liver (which was pretty nonspecific). Luckily, my numbers returned to normal towards the end of my hospital stay.

By Friday, Dr. S was willing to set Sunday as a go home date. Meanwhile, my mom had bought a shower seat for the house and Tommie had found a walker for me to use at home. We bought our tickets and Mere got all of my prescriptions filled on Friday so we were ready for Sunday. Sunday morning went well and we made it to the airport without any problems. The flight was challenging and left us both exhausted. But, we were so happy to be home on Sunday night and with our girls. We let Syd stay home from school on Monday so we could all just chill out together.

I am getting better by the day. My legs are getting stronger and my pain is getting more manageable. I start physical therapy next week....yeah! Dr. S assumes that I am done leaking for now. Of course, we never know until I get off pain meds and over the surgery. Either way, I need a break from surgery and LA for awhile. My doctors are anticipating about 4-6 weeks of recovery.

Without the generosity of friends, family, and our church....we would be in so much trouble. The entire time we were both in LA, our church brought dinner for my mom and the girls. They continued to bring meals to us after we returned home. They have been so generous with their time, money, and love. It has truly been overwhelming and reminds us both of how important it is to pay it forward. A good friend of mine and her husband (both fellows) also donated money, which blew us both away....their generosity brought us both to tears (and still does every time I think about it). Mere has started picking up some substitute teaching gigs at Syd's school but she can't work full time because I can't be left alone for long periods of time (since I am still VERY limited in what I can do). Plus, I need someone to take me back and forth to PT. I am hoping and praying that I can go back to work in April....PLEASE!!!!!!

Ok, I need to end this super long post. Thanks for hanging in to the end (if you are still reading)!

Tuesday, February 23, 2010

A Very Brief Update

First things first....I am settled into a room, 5 hrs post myelogram and doing great. They gave me a little less contrast this time, I was SUPER hydrated, and I have been upright as much as possible. I think the combination of the three really made a difference. Yes, I feel yucky with a headache (different than the spinal headaches) and some nausea, BUT, so much better than the 2 previous myelograms. Seems that all is clear (Mere hates it when I say stuff like that....she is really into Murphy's law). I think my pain tolerance is really getting better.

Now, we wait. I have no idea what the myelogram showed. I don't know if I will have surgery or a blood patch. I am leaning towards blood patch. Dr. S will come in sometime tonight and tell us the plan. I have learned that he just kind of whips in and out and you never really know when he will appear.

Thanks to everyone for all the prayers, meals, and love. We are SO LUCKY!! I just got to skype with Mere and Syd (Layne in bed) so I am loving life.

Sunday, February 21, 2010

Here I Go Again......

Tomorrow we go back to LA. Mere is staying with the girls and Tommie is going with me (again). The place where time crawls and I get stuck with lots of needles. I'm not really sure what this trip with bring. All I know is that I am having a myelogram on Tuesday. They are pre-medicating me with steroids and B.enadryl and keeping me in the hospital overnight. I'm also still on D.ilantin so I am really hoping there is no seizure in my future. Someone asked can you be so scared of something that you don't remember? I don't know. It is strange. I do remember a few little moments but it is strange to be so scared of something that is largely removed from my consciousness.

I am scheduled for surgery on Wednesday. Rather or not I will actually have surgery, I don't know. I'm thinking that if the myelogram is normal then they will do a large volume blood patch. The truth is, I have NO IDEA. What I do know....I really don't want to go again!!!!!

We are so blessed with amazing friends, family, and church.

I'll keep you posted.....unless I'm on a morphine drip.

Monday, February 15, 2010

To Seize or Not to Seize?

We (Tommie and I) leave on the 22nd. Mere is staying with the girls. We can't keep uprooting them. As much as I want her there (and she wants to be there) we can't put what we want before the girls. They need SOME stability right now. Their lives have been turned upside down over and over again.

I have a myelogram scheduled for the 23rd and surgery or blood patch or whatever on the 24th. I am still waiting to get all the details. The scheduler called me last week to schedule everything and I asked her if they were going to observe me in the hospital overnight after the myelogram since I had a seizure after the last one. She wasn't sure and put me through to the NP to ask my questions. I'm still waiting to hear back...........

Which leaves me plenty of time to ruminate about myelograms and seizures. I did some research and it turns out that the chance of having a seizure after a myelogram is 0.15%. Yes, you read it right....0.15%! Why can't I beat the odds at a casino or the lottery? I don't want to be the patient that has the rare complications, this is not my goal. I did find out that the propofol they used to sedate me is sometimes associated with increased seizure risk AND it was the only thing different about this myelogram and the 600 others I have had. I also found out that being super hydrated will decrease the nausea and help the dye move through your system quickly. Oh yeah, and putting your head up after a myelogram so the dye can drain away from your brain (I always lay flat because it usually feels better to be flat) will also decrease the tiny chance of a seizure. So my plan is no sedation, drink water and gatorade like crazy for the 24 hrs before the myelogram, and sit up after the myelogram. The only one of those options that doesn't sound painful is the water/gatorade part. I am also still on seizure meds which should also help.

When all of this started, a seizure was the last thing I was worried about and now it is at the top of my list. I don't remember the seizure, I just remember the fear and confusion as I started to wake up and the macerated tongue. I watched some grand mal seizures on and really felt like I was going to be sick. I. don't. want. to. do. it. again. I'm not afraid of dying or even having physical limitations but the thought of not having me, MY thoughts, MY brain...that does scare me. I haven't let myself stay in fear for very long, but this time I'm having a hard time getting away from it. I've heard it said that you can't have fear if you have faith. I guess my faith is starting to least today.

Saturday, February 6, 2010

Where's Tommie??

So, for those of you who have known me awhile...the appearance of Tommie in our life has probably seemed sudden. Ok, I know it has seemed sudden because a lot of you have told me. I have heard from more than one person, "who is Tommie?" We met about a year ago and our friendship has just happened. The only explanation I have is that there are some people you are just supposed to know....she must be one of them. One of our closest friends keeps saying, "she is family and I haven't even met her yet." Which has started a joke that Tommie is not real. So, this is for you Linda......until you can meet in the flesh you will just have to trust that these pictures are real (and not me with a cardboard cut out)!!

Friday, February 5, 2010

Balance Beam

I had to get this one down before I forget it.
We were driving in the car the other day listening to a kid's cd. The song was about a kid practicing on a balance beam and saying "I'm getting better every day." Layne got really excited from the backseat and the following conversation took place:

Layne: "mommy, this is your favorite song."
Me: "Really? Yeah. OK. I do like this song" (I had never heard this song before.)
Layne: "Because it says I'm getting better everyday, like you."
Me: "You're right Layne. I am getting better everyday."

OK. So maybe I was wrong about her not really understanding that I'm not 100%. I guess I don't give our sweet, smart 3 year old enough credit. I just want to shield them from any worry, fear, and general bad stuff. But, in this is just impossible. Everyone says, "it is good for them to learn these lessons now." Really? I don't think so. I think it is good for kids to be kids and not worry about adult things like leaky spines, financial woes, and death. No, you can't protect them from all bad things BUT I REALLY WANT TO!!!

I'm worried that Syd is going to quit believing us because everytime I go to LA I tell her I will be better when I get back. Obviously, that has not been the case. I think this time I will tell her that I will be better eventually but I'm not 100% sure that this will be my last trip to LA.

Everytime I hear Syd tell Layne, "we will do that when mommy gets better" a little piece of my heart breaks. For now I am trying to do as much normal stuff as I can with the family. Cook dinner, eat with them, make lunches, help with homework, go to cheerleading games, etc. Things that I can do if I'm fortified with pain meds and a way to put my head down after about 2 hours. Now that I know bed rest doesn't help and being up doesn't is just a matter of how much pain I can tolerate before I become a complete bitch.

My spine might still be leaking but maybe I am getting better at walking on this balance beam.

Thursday, February 4, 2010

Bigger Than My Body

Ok. I am not really a J.ohn Mayer fan. I don't have anything against him, I'm just not really into his music. I don't really know his songs or much about him. I woke up this morning with this verse in my head, "I'm bigger than my body gives me credit for." Weird. I haven't heard that song in a long time. So, I decided to look it up and listen to it. First, I looked under D.ave Matthews Band because that is who I thought sang it. See....I really have never had ANY connection to this song except for hearing it in passing on the radio. When I looked up the lyrics, it kind of took my breath away,

"This is a call to the color-blind
This is an IOU
I'm stranded behind a horizon line
Tied up in something true

Yes, I'm grounded
Got my wings clipped
I'm surrounded (by)
All this pavement
Guess I'll circle
While I'm waiting
For my fuse to dry

Someday I'll fly
Someday I'll soar
Someday I'll be so damn much more
Cause I'm bigger than my body gives me credit for

Why is it not my time?
What is there more to learn?
Shed this skin I've been tripping in
Never to quite return

Yes, I'm grounded
Got my wings clipped
I'm surrounded (by)
All this pavement
Guess I'll circle
While I'm waiting
For my fuse to dry

Someday I'll fly
Someday I'll soar
Someday I'll be so damn much more
Cause I'm bigger than my body gives me credit for
Cause I'm bigger than my body now

Maybe I'll tangle in the power lines
And it might be over in a second's time
But I'll gladly go down in a flame
If the flame's what it takes to remember my name

Yes, I'm grounded
Got my wings clipped
I'm surrounded (by)
All this pavement
Guess I'll circle
While I'm waiting
For my fuse to dry
For my fuse to dry

Someday I'll fly
Someday I'll soar
Someday I'll be so damn much more
Cause I'm bigger than my body
I'm bigger than my body
I'm bigger than my body now"

Also, this morning I was doing some reading and came across this quote from Thomas Merton, "I am nothing. It is not my job to understand."

So, that is what I'm going with. I'm bigger than my body gives me credit for and it is not my job to understand.

Wednesday, February 3, 2010

New name

I think I should change the name of this blog to, "The Headache" since that is what I have been talking about since October....yes, October!!! Ughhhh!!!! But, I want to chronicle this journey because I do think it will end EVENTUALLY and I want to remember the life lessons I am tired of learning.

So, long story short, the headaches are not gone. The post op pain has gotten MUCH better which means I can now tell which pain is which. When I lay down, not much pain. When I stand up, pain. It really is that simple. I can make it through several hours (almost an entire day) armed with pain pills and the ability to lay my head down when it gets really bad. But, by evening I. have. to. lay. down. There is NO way to avoid it. I even got to enjoy some of the nausea and ear popping today because I really pushed it to far. I can't really concentrate on anything serious for any period of time, which makes work impossible and the pain always reaches a threshold where I get really snippy. I have emailed Dr. S and the plan is for me to wait another week (after this one) to make sure and to let me continue to heal from the last surgery before going back to LA. The writing is on the wall, I know I'm going back. I have no idea what the plan will be this time. Truthfully, it doesn't matter. This is my only option. I have no control. So, as they say on AI, "you are going to Hollywood." This time Mere will stay home with the girls and Tommie will go with me the entire time. We can't keep uprooting the girls and LUCKILY Tommie offered to go again without me asking (I had ZERO intention of asking her to do this AGAIN). At this point in time, she knows all the doctors, the hospital, and the whole routine. And, having her there really is perfect (for me, not so much for her). Sometimes people are just put in your life and it just works. I'm just going to go with it.

I have spent a lot of time in fear of a lot of things. Mostly, that Dr. S won't be able to fix me, I won't be able to work, and I will always be in pain. For some reason, those fears are leaving. I have a deep, abiding faith that just won't let me believe that I would be brought this far and not be able to be a doctor, a mother, a wife, a friend, a daughter, a sister. I will have so much to give after this experience. So much to give back. I'm ready to get on with it! Unfortunately, I have learned that my timeline is meaningless.

I have spent my life planning. Setting goals, meeting goals, and moving to the next one. I have spent my life in the future. Suddenly, I can't plan. I can't say what I'll be doing next week or next month. Of course, I never really could....that was just an illusion. I have today and I am TRYING really hard to enjoy it while I can.

Mere is exhausted. I think the sheer worrying has almost put her over the edge. If I hiccup wrong, she jumps up to check on me. If I get up in the middle of the night, she is up to. If I am in the bathroom for to long (or any room for that matter), she comes to find me. She usually asked me if I have taken my D.ilantin (anti seizure medication) at least once a day. The last surgery caused some (likely temporary) damage to my laryngeal nerve, resulting in hoarseness and occasional trouble swallowing liquids. The end result, I cough a lot because liquids are always going down the "wrong" way. Every time I start coughing, she is there making sure I am ok. I think when this is over, she might sleep for a month. I maintain that I would NOT want the tables to be turned. I think it is easier to be the sick person then the spouse of a sick person. I may not be a smart woman, but I know what love is and ours is getting stronger and bigger by the hour.

And, there is some good news. I called CS hospital last night to start discussing payment plans. Thus far my medical bills (even with insurance) are somewhere near $100,000. I'm SO glad I have insurance (that was sarcastic if you couldn't tell). The woman on the phone was SO nice and helpful. Turns out, they have a financial assistance program that she was pretty sure I would qualify for. She said she feels like it will at the very least pay 60% of my medical bills and at the most 100% and it is good for 6 months. So, first I pray that my spine will get fixed and then I pray for the 100% assistance. Either way, I think it is AMAZING that they have such a program and it makes me want to donate money to them some day (when we actually have money again).

Ok. I'm going to try to get some sleep now. I have a perfect 7 year old sleeping next to me just waiting to be cuddled.

Tuesday, January 26, 2010

Fear and Uncertainty

So...we are back. Life is no where near back to normal but we are back and together as a family, which is the best gift that can be given. This surgery was A LOT more intensive and invasive then the last one. The pain has been much worse than last time and I have had to rely on pain pills a way more then I like. And, since there is so much post op pain it is impossible to know if the surgery worked. Dr. S said it will take 4-6 weeks to know for sure. And, that is where I spend a lot of time trying to stay out of the fear. If I could know that I was for sure fixed, then I would not have any trouble getting through the recovery. I'm just so TERRIFIED of having to do this over and over again. The good thing? Dr. S said he will not give up on me. That made me feel hopeful and good. For now, 4-6 weeks with no driving and no lifting over 5 lbs. That is really all I have control over right now. That is it. The rest is not up to me. This is a very hard pill to swallow. The financial uncertainty combined with the fear of continued bad health is really just life altering. I don't know how people do this. The further this goes, the less I identify with the doctor and the more I identify with the patient. I know there are no certainties in life....I could get hit by a bus tomorrow. But, when the illusion of certainties is shattered, it starts to mess with you. I pray A LOT and I am trying really hard to rely on my higher power but that is not always as easy as it sounds (or maybe it is).

Syd is confused and a little scared about what to do with me and Layne just wants me to pick her up. I know that if this ever ends, they won't remember this time and for that I am grateful.

I am also grateful for the amazing friends that we have. When we were still in LA, Rae (one of our online buddies) went way out of her way to pick Mere up at the airport and bring her to the hospital. To top it off, she had a basket full of goodies and a gift card waiting for her. The most amazing thing? She collected money from our online friends to make it happen. These are the things that make you know there is a God and that people are good. What an amazing thing that you can have a connection with people that live miles away and that you have never met in person. Thank you doesn't seem like enough, but it is all I have. So, Thank You!!!!

Monday, January 18, 2010


Today is the day. Surgery. Again. I talked to Dr. S last night and he says that the old leak is not completely sealed, SO he is going back into the same spot to revise the surgery. For some reason this makes me feel better then if there was a whole other leak. Still surgery, but I feel better. Right now I'm mostly just worried about the what ifs. I have experienced a lot of the what ifs, and frankly, I'm through with what ifs.

The latest what if is contrast dye and seizures. So, it was after the myelogram and Tommie and I were hanging out in the recovery room. That is the last thing I remember. Apparently, I started screaming and thrashing around. I. was. having. a seizure. I wish I had some great way to describe it but it is all so blurry. I do remember seeing Tommie there and knowing that she was with me but I didn't know who she was, or her name, or where I was. She looked scared, I remember that. There were lots of people talking to me. I don't really remember much until I came to in the ICU. That is when I started to get the story from Tommie. Apparently, the contrast dye can cause seizures. It is rare, but it happens, suprise! I guess after a bazillion myelograms you start playing the odds. We spent the night in the ICU with the worlds nicest nurse. The next day, they discharged me back to the hotel to return Monday for surgery. We have spent the weekend just hanging out and waiting.
I'm just so THANKFUL that we had not been discharged and we weren't walking down the hall or the street when the seizure started! There is always something to be thankful for....can you tell I've been with Tommie for a week?
Mere comes in tomorrow and Tommie leaves. I cannot wait to see Meredith!!! But, I'm glad that we did it this way. The girls didn't have a REALLY long time without us and Mere didn't have to see the seizure experience (which, according to Tommie was not a lot of fun).

Can I just say, time in LA crawls? These are the longest days of my life! Mere agreed when she was here and Tommie agrees now. It is strange. The days go on and on and on. It is 7am here, surgery is a noon and we have to be at the hospital at 10. There a million hours between now and then, or at least it seems that way.

Some things I don't want to forget:

--we are staying in a really cute hotel with a great little Italian restaurant. Last night we had the CUTEST waiter from Argentina. He was super yummy, so was the food.

--Tommie saw Barbra Streisand in the elevator at CS hospital. She played it cool, didn't say anything. Wonder if she will be there today?

--There is the sweetest gray bird here named, Shadow. He sings a lot and seems very happy.

I would definately stay at this hotel again!

So, the plan:
Surgery today. Mere come in tomorrow, Tommie leaves. Hopefully, home by Friday, but I really have NO idea.

Friday, January 15, 2010

One More Time

Life was good. Ok, life IS still good, just not what I planned. Of course, I am learning that my plans are silly and insignificant and rarely matter. It was last Thursday when the headaches started to become noticeable. I had to lay down at the end of a long day, I was having trouble concentrating on patients, and I just felt yucky. Could it all be in my head? Maybe. At least that is what I was hoping. Well, fast forward to today. Here I am, back in LA getting ready for another myelogram.

Long story short, they are back. I had a full spine MRI yesterday which showed some leakage at the old site. The surgeon said it could be new or it could be post op from my previous surgery. The only way to find out is a myelogram. Luckily, they are going to sedate me this time. Whew! He said that if the myelogram is abnormal, then I get to have surgery again. If it is normal, then maybe another blood patch. So, I find myself in a strange situation.....hoping for an abnormal myelogram and surgery. At least if it is not normal, then he can find the exact spot and fix it. If it is normal, then what? Non specific blood patches and unanswered questions. Can't go there now....not going to.

Tommie is here with me and Mere is still in LR with the girls. We are going one step at a time right now. I will post more as I know it.