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.

7 comments:

tallgirl said...

hugs!

Amy said...

I just can't believe this is still going on. I think about you often and hope for a resolution soon. Your strength is admirable. Sending you & Mere much peace & love as you continue this journey and endless amounts of wisdom and patience to your docs to get it right and keep you safe!

Jen said...

I loved this post. I've been crying since about the second paragraph. Thank you so much for sharing it.

Jen said...

Oh, I also wanted to say that it's during our darkest hours that we really learn what kind of person we are married to. My mom died of cancer less than two years after George and I were married, and his love, comfort and understanding really confirmed for me what kind of person he was. It's terrible that we have to go through things like this to really, fully understand this. I'm so happy for the two of you that you have one another. I can't imagine going through such a tough time alone.

angi said...

I am SO sorry you guys are going through all of this, yet am SO happy that you have each other. I am glad that you can see all of the amazing things going on around you, hopefully all of that will help you stay strong through all of it!

Sonya said...

Continuing to keep you in our thoughts and prayers. I wish we were closer!

Sarai and Dani said...

Oh my goodness! I had no idea!!! I have been out of blog world with others for awhile and was stunned to catch up with you!
Our family will be praying for you and your family every single night. Please kep us posted!!!
Big hugs...