Finally made it home last night. Not feeling well at all, but it's always nice to sleep in my own bed.
Before leaving the hospital, I collected all my records, and discovered the reason my docs were in a panic earlier this week. The report from my MRI says: "Left superior frontal subcortical white matter enhancing lesion that appears more conspicuous when compared to previous MRI. There is also a lesion in the left peri-occipital white matter. Differential diagnosis includes: Lymphoma (favored), granulomatous disease, and multiple sclerosis."
This makes me really uneasy, even though I know I've had the most qualified eyes and minds considering this from every angle.
Wednesday, March 21, 2012
Tuesday, March 20, 2012
How I landed myself in the hospital. Again.
I think an update is overdue with all that has happened recently; I'm not sure I can remember everything, but I'll try. I am on a couple different medications right now, so if something doesn't make sense, please don't judge! ;)
Here is the timeline:
February 21st-- First Day Back at Work!
My first day back at work! I worked half days for two weeks, which was mostly training on things that have changed since I left. It was so wonderful to see all my friends at Yodle, and really lifted my spirits. I already knew I was excited to go back to my job, but being there made me happier than I expected! I really love my friends there, and love my job, and it was also VERY liberating to get back to my "normal" life, have a routine, and realize how far I've come. I WALKED into work my first day. No crutches, nothing. I've been walking around for a couple months now, but I can't forget to appreciate how amazing it is.
Monday March 5th-- Foreshadowing a Setback
This was my first day back to work full time. The two weeks of part time had been physically challenging, but manageable. I often went straight home and went to bed for the night. It's hard to explain how exhausted I feel every day. I know that is one of the major symptoms of MS, but I can't imagine it won't get better. I really hope it will because its hard to function, being that tired every day.
Being back full time was great, but really really hard. I got to take on some new clients, do some real work, and it felt amazing to feel like things were getting back to normal. On Monday I felt sick all day, went straight home, straight to bed.
Tuesday, same. I was starting to get a crazy feeling of pressure in my head, and starting to feel regular dizziness. I've felt those both in the past, but not for quite awhile, and it was back when I wasn't doing well. Wednesday was also pretty rough, I was actually bumping into walls walking down straight hallways (a few of my friends actually saw and we had a good laugh!) Came home, made dinner with my 12 year old sister, and went to bed. That night, my mom came home from a trip, I told her how much I'd been struggling, and she was pretty worried. I told her it was fine, I was just doing too much, and it would get better as I adjusted to the new schedule.
Thursday, March 8th-- Real Life; Interrupted
It was a busy morning at work, I was getting ready for a meeting, and I got an email from my mom saying to call asap. I grabbed my phone and realized I had two missed calls from my mom and FOUR missed calls from Barrow's. My mom had emailed my neurologist about my symptoms and he wanted to take action to be sure everything was ok. I thought everyone was being pretty dramatic, since I'd just had an MRI less than two weeks prior. It didn't matter, the doc was insistent that we do an MRI, and not just soon, now. I had to leave work right then and there. I guess they had called and raised hell to get me on the MRI schedule, even moving other patients around. I felt kind of embarrassed about it, really feeling like this was not an emergency, and that everyone was going to a ton of effort over nothing. Don't get me wrong, I am very grateful for a doctor who listens and takes action when something is off, so it is hard to complain, but I felt frustrated that my medical issues were pulling me away from "normal" life and back into a moment of medical chaos. I also felt determined to not let anything derail me from my current plans of work and real life, so I would have preferred to drop the whole thing. I think everyone knew I was stressing over this, and as we were in the waiting room for the MRI, my neurologist (Dr. Okuda) called to give me a pep talk. As soon as I said hello, he said, "Mandy, don't freak out, ok?" Haha. And then he went on to tell me what he was thinking and why he felt this was important. It was really nice of him and just reminded me that I am in good hands.
As for dragging my feet on the MRI, I guess i still have some lessons to learn in humility. The MRI revealed a new lesion growing in the occipital (back) part of my brain. Even the doctor was shocked; he said he definitely wasn't expecting that. He said we needed to start me on a new round of Solumedrol steroids (the ones that nearly killed me the last time!) High doses of steroids (1000mg per day) are the first line of defense in treating a lesion (not that it helped my first lesion, but guess it was worth trying again.) The doc said he was pretty confident that I could do this from home with a nurse who would come out and set me up with the IV infusions. He said it was urgent to get started, so we went straight home from the MRI, and within an hour and a half, the poison arrived at my door. (by the way, so much for work! I left abruptly and never went back. I hate feeling unreliable like this. I know there's nothing I could have done, but it's really frustrating to me.)
Friday March 9th-- Mind over Matter. Or Not.
Already feeling like death from the steroids. Sooo frustrated about work and real life being interrupted. Somehow I just need that right now. I just need to feel like my life is my life. There are so many things that make me who I am, and none of this medical stuff is on that list. I've been sick since September, and in my book, it is time for all of this to go away. I decided that if I wanted it bad enough, I could still go to work, even though I felt like death. So I did. It was my way of fighting back, of being in control. I hurt like nothing you can imagine, and I could tell my head was in bad shape, but I wanted to be there, and I had things to do. Fortunately, I was able to get almost everything on my list done before I nearly collapsed around lunchtime. I was really frustrated that I couldn't make it through the whole day. My team had to pick up on a few things, which made me feel horrible. Here it is, my first real week back and I already need help.
March 10th and 11th-- Steroids are Hell
Steroids are hell; there is no other way to put it. I felt like I was literally dying these two days. Watching poison flowing into my veins, hoping it would somehow be something more than a toxin to me, was an experience that required me to be more mature than I actually am. So many things about this have made me grow up far beyond what and who I was before. Hopefully for the better. Guess we'll find out, if I'm ever allowed to get back to real life.
Monday March 12th-- Epic Fail
Still feeling really frustrated about this detour. Still feeling like death from the steroids. Still feeling like if I want something badly enough, I can make it happen. I get up, get dressed and go to work. My mom realizes this after I'm gone and about has a heart attack. My boss takes one look at me and sends me an invite for a meeting in 30 minutes. I was all but dismissed. My boss is amazing and supportive, but it was clear that he knew I was more of a liability than a help in my current condition. Looking back, I guess it was ridiculous to go into work. But I wanted to be there so badly, and I thought wanting it so much might be enough. Guess not.
Tuesday March 13th-- ER and Hospital Admission
I'm so sick I can barely get out of bed and can't put thoughts together or respond to basic questions. My mom emails my neurologist to say she is really uncomfortable with my medical condition. Doc says to go the the Barrows/St Joe's ER. We go, we get admitted, and lucky me, I am in the hospital again. On the Neuro Telemetry floor in the neuro tower this time. At least I have a sweet room here. Small things to be grateful for.
Wednesday March 14th-- New Symptom: I Can't Talk
In recovery at the hospital. Doctors are worried that I'm so sick, and really worried that I can barely connect my thoughts, and that my speech stalls about every other sentence when I am trying to talk. Trust me, I'm worried too. I told my nurse that communication is possibly my only almost-talent, so if that disappears, I'll have nothing. Lol.
Given my sickness and symptoms, and recent MRIs, the docs are starting to wonder if maybe there is something they have missed in my diagnosis. For me, I'm hoping that means there is still a chance we will find something infectious, some infection or parasite causing my brain lesions and symptoms. I can't even imagine the relief if this were something that could be cured by a round of special antibiotics. Then there are the doctors, who are also thinking of infectious causes, but they are also thinking of more serious causes. They are asking me about my family history of cancer, and saying they want to do some "additional investigation" into my case. Try to imagine my mom trying not to freak out...
The first test was a four hour trip to the MRI department. They did MRIs of my entire brain, entire T-spine and entire C-spine twice; with and without contrast dye. They must have been doing really small MRI cuts because its the longest MRI I've had so far. Very hard to hold deadly still for that long.
Regarding my speech issue, the doctor and my nurse both spent a fair amount of time explaining "Broca's Area" of the brain to me, and how the lesion has moved into that area in the past few months, and could be starting to cause problems. (Broca's Speech Area Explained: http://tinyurl.com/c95ra6) They reassured me that the brain is amazing at rewiring and that it shouldn't be long before this resolves (hopefully). They sent in a speech therapist to do an assessment and teach me some tricks for helping my brain to push through this and create new pathways. Not being able to say what I want to say is one of the most frustrating experiences. It hurts my head just trying to force my thoughts into words sometimes. (Fortunately, the docs are right, and this symptom has been resolving rapidly on it's own over the past week. Should be good to go in a couple weeks. One more daily function to be grateful for!)
Thursday, March 15th-- Diagnosis Reassessment: MS, Infection, or Cancer?
This was probably the most stressful day of all. The doctor (Dr. P., one of the hospital docs on my case) comes in in the morning and again asks about family history of cancer. He says they want to repeat my spinal tap. I ask why, because we have already done that in the past. He says that things sometimes don't show up for awhile, and the results can be different. He also says "we will be looking for some different things this time." He then tells me that they got my MRI back and that it "has changed" from the MRI one week ago. I ask what that means, how it has changed, and he declined to answer, saying he'd have more information for me later. He said that they were planning a meeting with several doctors and neuro radiologists to discuss my MRIs and my case. They wanted to get lots of different eyes on my scans, see what everyone thought, and decide how they thought we should proceed. In all reality, that is an amazing opportunity. Here I am at Barrow, the absolutely best place for neurological research and treatment, and they want to pull their most qualified neurologists and radiologists together to consider my case. I truly count that a blessing, because there is alot of confidence in moving forward when a team of specialists like this come to conclusions together. At the time, I also considered it very scary. To attract that kind of attention, it meant they were really worried about something.
Doctor P told me that the spinal tap (lumbar puncture) would happen today, and that they would come talk to me after their big meeting. I wasn't really sure what to make of this update, but I realized that every card, every diagnosis, was back on the table for a moment, and it was a little overwhelming. I was siding with infectious; treatable. Crossing my fingers, actually. But I also realized there was a chance it could go another direction, and I didn't really want to think about it. I was alone when I got this update (doctors like to make their rounds really early sometimes) so i then had the great task of calling to tell my mom everything he had said, and hoping she wouldn't panic. She actually was very calm and collected, though later i realized she was hiding a little mini melt down. Hard stuff. We had some good talks while we were waiting to hear more news, and as always, my mom was a wonderful support to me.
I got the spinal tap, and despite how horribly uncomfortable those are, I was actually really lucky because the neuro radiologist was training a brand new resident. He talked through every single thing he was doing, not doing, looking for, tips and tricks etc. The academic side of me was so fascinated, I found myself chiming in and asking questions along with the resident....all the while, I had a giant needle in my spinal cord dripping out spinal fluid. I don't know how that academic curiosity gets the best of me sometimes, but it really helps.
Later in the day, Dr Walker and Dr Chen came in (two of the hospital docs on my case) and told me that they had just gotten out of "the meeting" and that they had spent so much time staring at my MRIs that my lesions were burned into their brains. They said that the majority of the team was confident that these lesions are "most likely" demyelinations (MS related) and not infectious or cancerous, but that they all agreed the larger lesion is suspicious, and not behaving like they would expect. They went back and forth about whether or not we needed to do a biopsy to be certain we know what this is, and even decided that they should. But then they realized my spinal tap was positive for proteins often found in MS cases, and as a team they all decided that we should continue on the current course for now. The current course is: Start aggressive MS treatment with the Tysabri (Tysabri is usually a last resort medication when all other MS treaments have failed, because it is so aggressive, and has dangerous possible side effects), monitor the lesions every month, keep an eye on the enhancement (which tells us if the lesions are still active), stay in close touch with Dr. Okuda about any future symptoms, and reconsider a biopsy if that main lesion starts growing again. I narrowly escaped a hole in my head today; I guess they had even called the neurosurgeon for a consult and to put me on the schedule. But in the end, with the spinal tap results, everyone decided we should hold off and see what happens in the coming months.
It's a 50% relief, 50% disappointment. Obviously I'm glad they decided against cancer. But honestly, I'm pretty disappointed they didn't rule in favor of infection. MS feels like a life sentence, and I still have trouble figuring out how to go on being "just me" when i know this will be hanging over my head forever. It's been six months since I've felt in control of my life. And just when i thought things were getting better, and I was taking control again...i was ripped out of my first attempts at real life and forcefully thrown back into my medical world. I can't begin to explain how frustrating that feels; how powerless and small that makes me feel. I was pretty mad about it this week, but a chaplain here gave me some really great advice. She said, "honestly, are we ever really in control anyways?" And I realized she is right. We have the illusion of control, and we do the best we can to make order and value out of the lives we've been given, but really, there is a much bigger plan than this life, and sometimes there are lessons we need to learn, experiences we need to have, that don't fit into our plans for ourselves. We just have to trust in God, realize that he knows us, trust that he loves us, and keep walking forward each day.
Friday March 16th-- Going home derailed by an EEG. Seizures?
Since the plan was to continue with the current course of MS treatment and follow up, and since I was improved enough to be considered medically stable, I assumed they would send me home today. Unfortunately, I continued to feel sick, and my speech was still noticeably altered. The doctors decided to do an EEG to rule out the possibility that my speech problems were caused by seizures in my brain that weren't presenting externally. So much for going home.
It turned out to be a good thing that I stayed, because that night I got a headache that completely shut me down. Felt like my head was bursting from the inside out. I guessed it might be from the spinal tap, and tried to sleep it off the best I could. I had actually had a bad headache on Thursday night too, but this was completely different.
Saturday March 17th-- My First Migraine and a Scary Drug Reaction
Full blown migraine. Nauseous, unable to tolerate light and sound, blurry vision, unable to think a singe thought because every cell in my head was overcome with excruciating pain. I have honestly never felt anything like this. (i think i thought I had a migraine once last year.....let me tell you, I didn't) The doctors where somewhat concerned since I have never had migraines, nobody in my family get migraines, and obviously because I have suspicious lesions growing in my head.
This day also got pretty dramatic when I had a sudden onset of horrific pain in my upper back/lower neck. Within a minute of starting, it hit a ten on the pain scale, and was shooting pain through my shoulders and down my arms. It was excruciating in a way I wouldn't have thought possible. Fortunately, the nurse was in the room and got the doctor on the phone withing a minute and got orders for immediate pain medication.
Because the pain was borderline traumatic, the doctor decided to give me a pretty high impact "cocktail" of meds. The first medicine was an iv opiate, and things only got worse from there. The nurse was putting the medicine through my IV, and before she was done, i started feeling funny. I thought i was imagining it at first; being in so much pain, my body was attempting to pretend it didn't exist. Then a sudden wave of toxic sensations passed over me and I knew I wasn't ok. I told the nurse I felt strange, and asked if it could be the medication she was giving me. She said, "funny how?" Before she even finished the sentence, my body suddenly started to react, and it was dramatic and fast. I suddenly couldn't breathe at all. It was like there were a thousand pounds on my chest and I was fighting for every breath. It was the feeling of those amusement rides; the ones that suddenly drop hundreds of feet, steal your breath, and put your body into a confused debate between stunned stillness, and all-out survival mode. I realized that not breathing was a problem, so i tried to focus every thought, every ounce of energy on taking and exhaling breaths. I was hyperventilating fast, because my body was starting to panic when I couldn't breathe. The nurse was calling for backup and oxygen, and she was actually a superstar at coaching me through the drama. It was about ten minutes before everything calmed down enough that I could even say a word in answer to the nurse's questions. It was really scary, but thanks to the nurse, I knew it wasn't dangerous, it was just a dramatic reaction to the medication. Trust me, that drug is going on the DO NOT USE list for me. The other meds they gave me were powerful, but they made me feel drugged, and really only took the edge off of my headache. It was manageable, but I couldn't believe the pain could still push through.
Sunday March 18th-- Denial and Refusal (masochism?)
imagine the worse possible pain of your life. In your head. Then imagine it lasting for three days straight. This was the worst day by far. The doctors had tried four different medicines the day before, and it was decided that I would try a new drug today, to see if it was something that might help me in a home setting with migraines, should they continue to be a problem. Unfortunately, the pharmacy didn't get the medicine up here until my migraine was completely out of control. (not their fault, it happened fast). The migraine raged for about two hours after I took the medicine and then finally calmed down. For an hour! It calmed my headache for an hour. Then it came back, full strength.
A normal person would have called the nurse and asked for something else. I honestly don't know what's wrong with me this week. I'm feeling obstinate about all sorts of things. I keep thinking I can fight through impossibilities if I really want to. I decided that I could will this headache away if i focused hard enough, and let's face it...if I was mad enough. Haha. I was really mad. I was in denial. I've never had migraines before, never had to deal with this, and was unwilling to accept that this may be part of my new life with MS. They say 56% of people with MS have chronic migraines, compared to about 16% in the general population. Denial is just the beginning. I think refusal may be the right word. I refused to have a migraine. And I spent almost the whole day with pain raging at about an 8-9 on the pain scale. At shift change, I got a new nurse, and when she offered me Tylenol (haha) I finally broke down and told her the truth about what I needed. She called the doctor and ordered Fioricet for me, which took a solid two hours to give me any relief, but then, miraculously, I slept! I woke up at 2am and my head didn't hurt at all! I was so excited, so relieved, that I stayed awake for an hour just enjoying the peace and stillness in my head. I later woke up with a horrible stomach pain that required two hours and two different medications to fix, but the whole time, all i could think of was how happy I was that my head didn't hurt.
Monday March 19th-- A Clever Rescue
Got up at around 7:30 am. My bishop from church stopped by to visit, and it was really great to see him :) My head felt fantastic. It was a zero on the pain scale. Finally, I might be in good enough shape to send home. At 8:00 my stomach starts to hurt again, and I am kind of annoyed. Then at 8:30 my forehead starts prickling, and within fifteen minutes I start feeling a familiar pressure and pain in my forehead. I'm so mad i could cry. Ok, that's a lie. I did cry.
I should be calling for help, but I am still mad and thinking I can will this away, or that it won't really come. By 9:00 I have a headache so severe I can't move from the little stool I'm sitting on by the window. My stomach ache strangely, is bad enough to rival my head, which is really saying something. I keep thinking I should call for the nurse to help me sort this out, but I can't move, I'm so overwhelmed by the various pains. Then I have a brilliant thought. Because I am on the telemetry floor, I have a heart monitor with multiple leads attached to my chest. Whenever one of them accidentally snaps off, the people who monitor the telemetry readings will call the nurse and tell them to go reconnect the monitor. The response on that is usually pretty fast. It was my saving grace. I pulled off two of the leads, and sure enough, within minutes, the nurse comes in to find me in my pathetic state, and gets help for my stomach and ibuprofen for my head (obviously that's just a start for the headache, but since the doctors are experimenting with different migraine meds, they have only been ordering them one dose at a time, so there wasn't anything else to give me yet). I'm sitting there in agony, holding my head, trying to eat saltines, as the nurse is flushing zofran (one of two stomach meds) into my IV when the doctor walks in. It was perfect timing because he immediately wrote prescriptions to help. And miraculously, this combination of meds worked!! By noon, I was napping peacefully, and was pain free until about 4:00 when the prickling forehead and then pain started pushing through again. Fortunately, this time we were prepared, and I took another migraine medication (different because we are trying to find out what works best so they know what to send me home with) at the first signs. The migraine still hit, but about two hours later I felt great again. That was several hours ago, and I am soo relieved to have my head back and pain free, that I almost can't bring myself to fall asleep. Every morning, that pain comes back. So here I am blogging, appreciating my wonderfully clear head, instead of sleeping. I wonder what sleep deprivation does for migraines??
EEG Results
In other news, the EEG was clean, no detected seizure activity, which is great news. (I don't need seizures on top of everything else!) As expected though, it does mean the speech issue is likely caused by the bigger lesion damaging the Broca's speech area of my brain (not great news). Fortunately, I'm noticing lots of improvement already. The human brain amazes me. I'm also very blessed, I think.
Venous MRI (MRV)
The doctor who saw me this morning (Dr P) ordered an MRV (like an MRI, but it only looks at the vessels and veins in your head) to be sure these are migraines, and not a clot or damage to the venous system. There is enough damage and inflammation from the lesions to trigger migraines, but the docs are concerned with how severe and prolonged this has been, and they just want to make sure that they aren't missing something. Should have results tomorrow. If the MRV is clean and the pain meds are working, I should be breaking out of here tomorrow and going home!! Fingers crossed, but not holding my breath.
Infection Studies
We are doing a whole round of blood work, repeating titers for cocci, Lyme, and a handful of other infectious diseases that could possibly cause lesions and my symptoms. We ran these tests multiple times in November, but on the off chance that something was hiding then, we are running them again. We are also waiting on infectious test results from my spinal fluid. I know its a long shot at this point, but the diagnosis of an infection would make this all go away with treatment. Here's to hoping, even though I know its impossible! Glad we are triple checking.
Still Monday-- Signing off, going to bed
Ok, so much for my brief update. I guess it's therapeutic for me to write everything out. Also, I have been terrible at updating anyone on anything these past two weeks, so hopefully this will make up for that.
Thanks to everyone who has sent encouraging messages and texts, even though they didn't know what was happening. It really means alot and keeps me going when this seems impossible. Thanks also for your prayers and meditations. I can feel them every day.
Love to all,
Mandy
Here is the timeline:
February 21st-- First Day Back at Work!
My first day back at work! I worked half days for two weeks, which was mostly training on things that have changed since I left. It was so wonderful to see all my friends at Yodle, and really lifted my spirits. I already knew I was excited to go back to my job, but being there made me happier than I expected! I really love my friends there, and love my job, and it was also VERY liberating to get back to my "normal" life, have a routine, and realize how far I've come. I WALKED into work my first day. No crutches, nothing. I've been walking around for a couple months now, but I can't forget to appreciate how amazing it is.
Monday March 5th-- Foreshadowing a Setback
This was my first day back to work full time. The two weeks of part time had been physically challenging, but manageable. I often went straight home and went to bed for the night. It's hard to explain how exhausted I feel every day. I know that is one of the major symptoms of MS, but I can't imagine it won't get better. I really hope it will because its hard to function, being that tired every day.
Being back full time was great, but really really hard. I got to take on some new clients, do some real work, and it felt amazing to feel like things were getting back to normal. On Monday I felt sick all day, went straight home, straight to bed.
Tuesday, same. I was starting to get a crazy feeling of pressure in my head, and starting to feel regular dizziness. I've felt those both in the past, but not for quite awhile, and it was back when I wasn't doing well. Wednesday was also pretty rough, I was actually bumping into walls walking down straight hallways (a few of my friends actually saw and we had a good laugh!) Came home, made dinner with my 12 year old sister, and went to bed. That night, my mom came home from a trip, I told her how much I'd been struggling, and she was pretty worried. I told her it was fine, I was just doing too much, and it would get better as I adjusted to the new schedule.
Thursday, March 8th-- Real Life; Interrupted
It was a busy morning at work, I was getting ready for a meeting, and I got an email from my mom saying to call asap. I grabbed my phone and realized I had two missed calls from my mom and FOUR missed calls from Barrow's. My mom had emailed my neurologist about my symptoms and he wanted to take action to be sure everything was ok. I thought everyone was being pretty dramatic, since I'd just had an MRI less than two weeks prior. It didn't matter, the doc was insistent that we do an MRI, and not just soon, now. I had to leave work right then and there. I guess they had called and raised hell to get me on the MRI schedule, even moving other patients around. I felt kind of embarrassed about it, really feeling like this was not an emergency, and that everyone was going to a ton of effort over nothing. Don't get me wrong, I am very grateful for a doctor who listens and takes action when something is off, so it is hard to complain, but I felt frustrated that my medical issues were pulling me away from "normal" life and back into a moment of medical chaos. I also felt determined to not let anything derail me from my current plans of work and real life, so I would have preferred to drop the whole thing. I think everyone knew I was stressing over this, and as we were in the waiting room for the MRI, my neurologist (Dr. Okuda) called to give me a pep talk. As soon as I said hello, he said, "Mandy, don't freak out, ok?" Haha. And then he went on to tell me what he was thinking and why he felt this was important. It was really nice of him and just reminded me that I am in good hands.
As for dragging my feet on the MRI, I guess i still have some lessons to learn in humility. The MRI revealed a new lesion growing in the occipital (back) part of my brain. Even the doctor was shocked; he said he definitely wasn't expecting that. He said we needed to start me on a new round of Solumedrol steroids (the ones that nearly killed me the last time!) High doses of steroids (1000mg per day) are the first line of defense in treating a lesion (not that it helped my first lesion, but guess it was worth trying again.) The doc said he was pretty confident that I could do this from home with a nurse who would come out and set me up with the IV infusions. He said it was urgent to get started, so we went straight home from the MRI, and within an hour and a half, the poison arrived at my door. (by the way, so much for work! I left abruptly and never went back. I hate feeling unreliable like this. I know there's nothing I could have done, but it's really frustrating to me.)
Friday March 9th-- Mind over Matter. Or Not.
Already feeling like death from the steroids. Sooo frustrated about work and real life being interrupted. Somehow I just need that right now. I just need to feel like my life is my life. There are so many things that make me who I am, and none of this medical stuff is on that list. I've been sick since September, and in my book, it is time for all of this to go away. I decided that if I wanted it bad enough, I could still go to work, even though I felt like death. So I did. It was my way of fighting back, of being in control. I hurt like nothing you can imagine, and I could tell my head was in bad shape, but I wanted to be there, and I had things to do. Fortunately, I was able to get almost everything on my list done before I nearly collapsed around lunchtime. I was really frustrated that I couldn't make it through the whole day. My team had to pick up on a few things, which made me feel horrible. Here it is, my first real week back and I already need help.
March 10th and 11th-- Steroids are Hell
Steroids are hell; there is no other way to put it. I felt like I was literally dying these two days. Watching poison flowing into my veins, hoping it would somehow be something more than a toxin to me, was an experience that required me to be more mature than I actually am. So many things about this have made me grow up far beyond what and who I was before. Hopefully for the better. Guess we'll find out, if I'm ever allowed to get back to real life.
Monday March 12th-- Epic Fail
Still feeling really frustrated about this detour. Still feeling like death from the steroids. Still feeling like if I want something badly enough, I can make it happen. I get up, get dressed and go to work. My mom realizes this after I'm gone and about has a heart attack. My boss takes one look at me and sends me an invite for a meeting in 30 minutes. I was all but dismissed. My boss is amazing and supportive, but it was clear that he knew I was more of a liability than a help in my current condition. Looking back, I guess it was ridiculous to go into work. But I wanted to be there so badly, and I thought wanting it so much might be enough. Guess not.
Tuesday March 13th-- ER and Hospital Admission
I'm so sick I can barely get out of bed and can't put thoughts together or respond to basic questions. My mom emails my neurologist to say she is really uncomfortable with my medical condition. Doc says to go the the Barrows/St Joe's ER. We go, we get admitted, and lucky me, I am in the hospital again. On the Neuro Telemetry floor in the neuro tower this time. At least I have a sweet room here. Small things to be grateful for.
Wednesday March 14th-- New Symptom: I Can't Talk
In recovery at the hospital. Doctors are worried that I'm so sick, and really worried that I can barely connect my thoughts, and that my speech stalls about every other sentence when I am trying to talk. Trust me, I'm worried too. I told my nurse that communication is possibly my only almost-talent, so if that disappears, I'll have nothing. Lol.
Given my sickness and symptoms, and recent MRIs, the docs are starting to wonder if maybe there is something they have missed in my diagnosis. For me, I'm hoping that means there is still a chance we will find something infectious, some infection or parasite causing my brain lesions and symptoms. I can't even imagine the relief if this were something that could be cured by a round of special antibiotics. Then there are the doctors, who are also thinking of infectious causes, but they are also thinking of more serious causes. They are asking me about my family history of cancer, and saying they want to do some "additional investigation" into my case. Try to imagine my mom trying not to freak out...
The first test was a four hour trip to the MRI department. They did MRIs of my entire brain, entire T-spine and entire C-spine twice; with and without contrast dye. They must have been doing really small MRI cuts because its the longest MRI I've had so far. Very hard to hold deadly still for that long.
Regarding my speech issue, the doctor and my nurse both spent a fair amount of time explaining "Broca's Area" of the brain to me, and how the lesion has moved into that area in the past few months, and could be starting to cause problems. (Broca's Speech Area Explained: http://tinyurl.com/c95ra6) They reassured me that the brain is amazing at rewiring and that it shouldn't be long before this resolves (hopefully). They sent in a speech therapist to do an assessment and teach me some tricks for helping my brain to push through this and create new pathways. Not being able to say what I want to say is one of the most frustrating experiences. It hurts my head just trying to force my thoughts into words sometimes. (Fortunately, the docs are right, and this symptom has been resolving rapidly on it's own over the past week. Should be good to go in a couple weeks. One more daily function to be grateful for!)
Thursday, March 15th-- Diagnosis Reassessment: MS, Infection, or Cancer?
This was probably the most stressful day of all. The doctor (Dr. P., one of the hospital docs on my case) comes in in the morning and again asks about family history of cancer. He says they want to repeat my spinal tap. I ask why, because we have already done that in the past. He says that things sometimes don't show up for awhile, and the results can be different. He also says "we will be looking for some different things this time." He then tells me that they got my MRI back and that it "has changed" from the MRI one week ago. I ask what that means, how it has changed, and he declined to answer, saying he'd have more information for me later. He said that they were planning a meeting with several doctors and neuro radiologists to discuss my MRIs and my case. They wanted to get lots of different eyes on my scans, see what everyone thought, and decide how they thought we should proceed. In all reality, that is an amazing opportunity. Here I am at Barrow, the absolutely best place for neurological research and treatment, and they want to pull their most qualified neurologists and radiologists together to consider my case. I truly count that a blessing, because there is alot of confidence in moving forward when a team of specialists like this come to conclusions together. At the time, I also considered it very scary. To attract that kind of attention, it meant they were really worried about something.
Doctor P told me that the spinal tap (lumbar puncture) would happen today, and that they would come talk to me after their big meeting. I wasn't really sure what to make of this update, but I realized that every card, every diagnosis, was back on the table for a moment, and it was a little overwhelming. I was siding with infectious; treatable. Crossing my fingers, actually. But I also realized there was a chance it could go another direction, and I didn't really want to think about it. I was alone when I got this update (doctors like to make their rounds really early sometimes) so i then had the great task of calling to tell my mom everything he had said, and hoping she wouldn't panic. She actually was very calm and collected, though later i realized she was hiding a little mini melt down. Hard stuff. We had some good talks while we were waiting to hear more news, and as always, my mom was a wonderful support to me.
I got the spinal tap, and despite how horribly uncomfortable those are, I was actually really lucky because the neuro radiologist was training a brand new resident. He talked through every single thing he was doing, not doing, looking for, tips and tricks etc. The academic side of me was so fascinated, I found myself chiming in and asking questions along with the resident....all the while, I had a giant needle in my spinal cord dripping out spinal fluid. I don't know how that academic curiosity gets the best of me sometimes, but it really helps.
Later in the day, Dr Walker and Dr Chen came in (two of the hospital docs on my case) and told me that they had just gotten out of "the meeting" and that they had spent so much time staring at my MRIs that my lesions were burned into their brains. They said that the majority of the team was confident that these lesions are "most likely" demyelinations (MS related) and not infectious or cancerous, but that they all agreed the larger lesion is suspicious, and not behaving like they would expect. They went back and forth about whether or not we needed to do a biopsy to be certain we know what this is, and even decided that they should. But then they realized my spinal tap was positive for proteins often found in MS cases, and as a team they all decided that we should continue on the current course for now. The current course is: Start aggressive MS treatment with the Tysabri (Tysabri is usually a last resort medication when all other MS treaments have failed, because it is so aggressive, and has dangerous possible side effects), monitor the lesions every month, keep an eye on the enhancement (which tells us if the lesions are still active), stay in close touch with Dr. Okuda about any future symptoms, and reconsider a biopsy if that main lesion starts growing again. I narrowly escaped a hole in my head today; I guess they had even called the neurosurgeon for a consult and to put me on the schedule. But in the end, with the spinal tap results, everyone decided we should hold off and see what happens in the coming months.
It's a 50% relief, 50% disappointment. Obviously I'm glad they decided against cancer. But honestly, I'm pretty disappointed they didn't rule in favor of infection. MS feels like a life sentence, and I still have trouble figuring out how to go on being "just me" when i know this will be hanging over my head forever. It's been six months since I've felt in control of my life. And just when i thought things were getting better, and I was taking control again...i was ripped out of my first attempts at real life and forcefully thrown back into my medical world. I can't begin to explain how frustrating that feels; how powerless and small that makes me feel. I was pretty mad about it this week, but a chaplain here gave me some really great advice. She said, "honestly, are we ever really in control anyways?" And I realized she is right. We have the illusion of control, and we do the best we can to make order and value out of the lives we've been given, but really, there is a much bigger plan than this life, and sometimes there are lessons we need to learn, experiences we need to have, that don't fit into our plans for ourselves. We just have to trust in God, realize that he knows us, trust that he loves us, and keep walking forward each day.
Friday March 16th-- Going home derailed by an EEG. Seizures?
Since the plan was to continue with the current course of MS treatment and follow up, and since I was improved enough to be considered medically stable, I assumed they would send me home today. Unfortunately, I continued to feel sick, and my speech was still noticeably altered. The doctors decided to do an EEG to rule out the possibility that my speech problems were caused by seizures in my brain that weren't presenting externally. So much for going home.
It turned out to be a good thing that I stayed, because that night I got a headache that completely shut me down. Felt like my head was bursting from the inside out. I guessed it might be from the spinal tap, and tried to sleep it off the best I could. I had actually had a bad headache on Thursday night too, but this was completely different.
Saturday March 17th-- My First Migraine and a Scary Drug Reaction
Full blown migraine. Nauseous, unable to tolerate light and sound, blurry vision, unable to think a singe thought because every cell in my head was overcome with excruciating pain. I have honestly never felt anything like this. (i think i thought I had a migraine once last year.....let me tell you, I didn't) The doctors where somewhat concerned since I have never had migraines, nobody in my family get migraines, and obviously because I have suspicious lesions growing in my head.
This day also got pretty dramatic when I had a sudden onset of horrific pain in my upper back/lower neck. Within a minute of starting, it hit a ten on the pain scale, and was shooting pain through my shoulders and down my arms. It was excruciating in a way I wouldn't have thought possible. Fortunately, the nurse was in the room and got the doctor on the phone withing a minute and got orders for immediate pain medication.
Because the pain was borderline traumatic, the doctor decided to give me a pretty high impact "cocktail" of meds. The first medicine was an iv opiate, and things only got worse from there. The nurse was putting the medicine through my IV, and before she was done, i started feeling funny. I thought i was imagining it at first; being in so much pain, my body was attempting to pretend it didn't exist. Then a sudden wave of toxic sensations passed over me and I knew I wasn't ok. I told the nurse I felt strange, and asked if it could be the medication she was giving me. She said, "funny how?" Before she even finished the sentence, my body suddenly started to react, and it was dramatic and fast. I suddenly couldn't breathe at all. It was like there were a thousand pounds on my chest and I was fighting for every breath. It was the feeling of those amusement rides; the ones that suddenly drop hundreds of feet, steal your breath, and put your body into a confused debate between stunned stillness, and all-out survival mode. I realized that not breathing was a problem, so i tried to focus every thought, every ounce of energy on taking and exhaling breaths. I was hyperventilating fast, because my body was starting to panic when I couldn't breathe. The nurse was calling for backup and oxygen, and she was actually a superstar at coaching me through the drama. It was about ten minutes before everything calmed down enough that I could even say a word in answer to the nurse's questions. It was really scary, but thanks to the nurse, I knew it wasn't dangerous, it was just a dramatic reaction to the medication. Trust me, that drug is going on the DO NOT USE list for me. The other meds they gave me were powerful, but they made me feel drugged, and really only took the edge off of my headache. It was manageable, but I couldn't believe the pain could still push through.
Sunday March 18th-- Denial and Refusal (masochism?)
imagine the worse possible pain of your life. In your head. Then imagine it lasting for three days straight. This was the worst day by far. The doctors had tried four different medicines the day before, and it was decided that I would try a new drug today, to see if it was something that might help me in a home setting with migraines, should they continue to be a problem. Unfortunately, the pharmacy didn't get the medicine up here until my migraine was completely out of control. (not their fault, it happened fast). The migraine raged for about two hours after I took the medicine and then finally calmed down. For an hour! It calmed my headache for an hour. Then it came back, full strength.
A normal person would have called the nurse and asked for something else. I honestly don't know what's wrong with me this week. I'm feeling obstinate about all sorts of things. I keep thinking I can fight through impossibilities if I really want to. I decided that I could will this headache away if i focused hard enough, and let's face it...if I was mad enough. Haha. I was really mad. I was in denial. I've never had migraines before, never had to deal with this, and was unwilling to accept that this may be part of my new life with MS. They say 56% of people with MS have chronic migraines, compared to about 16% in the general population. Denial is just the beginning. I think refusal may be the right word. I refused to have a migraine. And I spent almost the whole day with pain raging at about an 8-9 on the pain scale. At shift change, I got a new nurse, and when she offered me Tylenol (haha) I finally broke down and told her the truth about what I needed. She called the doctor and ordered Fioricet for me, which took a solid two hours to give me any relief, but then, miraculously, I slept! I woke up at 2am and my head didn't hurt at all! I was so excited, so relieved, that I stayed awake for an hour just enjoying the peace and stillness in my head. I later woke up with a horrible stomach pain that required two hours and two different medications to fix, but the whole time, all i could think of was how happy I was that my head didn't hurt.
Monday March 19th-- A Clever Rescue
Got up at around 7:30 am. My bishop from church stopped by to visit, and it was really great to see him :) My head felt fantastic. It was a zero on the pain scale. Finally, I might be in good enough shape to send home. At 8:00 my stomach starts to hurt again, and I am kind of annoyed. Then at 8:30 my forehead starts prickling, and within fifteen minutes I start feeling a familiar pressure and pain in my forehead. I'm so mad i could cry. Ok, that's a lie. I did cry.
I should be calling for help, but I am still mad and thinking I can will this away, or that it won't really come. By 9:00 I have a headache so severe I can't move from the little stool I'm sitting on by the window. My stomach ache strangely, is bad enough to rival my head, which is really saying something. I keep thinking I should call for the nurse to help me sort this out, but I can't move, I'm so overwhelmed by the various pains. Then I have a brilliant thought. Because I am on the telemetry floor, I have a heart monitor with multiple leads attached to my chest. Whenever one of them accidentally snaps off, the people who monitor the telemetry readings will call the nurse and tell them to go reconnect the monitor. The response on that is usually pretty fast. It was my saving grace. I pulled off two of the leads, and sure enough, within minutes, the nurse comes in to find me in my pathetic state, and gets help for my stomach and ibuprofen for my head (obviously that's just a start for the headache, but since the doctors are experimenting with different migraine meds, they have only been ordering them one dose at a time, so there wasn't anything else to give me yet). I'm sitting there in agony, holding my head, trying to eat saltines, as the nurse is flushing zofran (one of two stomach meds) into my IV when the doctor walks in. It was perfect timing because he immediately wrote prescriptions to help. And miraculously, this combination of meds worked!! By noon, I was napping peacefully, and was pain free until about 4:00 when the prickling forehead and then pain started pushing through again. Fortunately, this time we were prepared, and I took another migraine medication (different because we are trying to find out what works best so they know what to send me home with) at the first signs. The migraine still hit, but about two hours later I felt great again. That was several hours ago, and I am soo relieved to have my head back and pain free, that I almost can't bring myself to fall asleep. Every morning, that pain comes back. So here I am blogging, appreciating my wonderfully clear head, instead of sleeping. I wonder what sleep deprivation does for migraines??
EEG Results
In other news, the EEG was clean, no detected seizure activity, which is great news. (I don't need seizures on top of everything else!) As expected though, it does mean the speech issue is likely caused by the bigger lesion damaging the Broca's speech area of my brain (not great news). Fortunately, I'm noticing lots of improvement already. The human brain amazes me. I'm also very blessed, I think.
Venous MRI (MRV)
The doctor who saw me this morning (Dr P) ordered an MRV (like an MRI, but it only looks at the vessels and veins in your head) to be sure these are migraines, and not a clot or damage to the venous system. There is enough damage and inflammation from the lesions to trigger migraines, but the docs are concerned with how severe and prolonged this has been, and they just want to make sure that they aren't missing something. Should have results tomorrow. If the MRV is clean and the pain meds are working, I should be breaking out of here tomorrow and going home!! Fingers crossed, but not holding my breath.
Infection Studies
We are doing a whole round of blood work, repeating titers for cocci, Lyme, and a handful of other infectious diseases that could possibly cause lesions and my symptoms. We ran these tests multiple times in November, but on the off chance that something was hiding then, we are running them again. We are also waiting on infectious test results from my spinal fluid. I know its a long shot at this point, but the diagnosis of an infection would make this all go away with treatment. Here's to hoping, even though I know its impossible! Glad we are triple checking.
Still Monday-- Signing off, going to bed
Ok, so much for my brief update. I guess it's therapeutic for me to write everything out. Also, I have been terrible at updating anyone on anything these past two weeks, so hopefully this will make up for that.
Thanks to everyone who has sent encouraging messages and texts, even though they didn't know what was happening. It really means alot and keeps me going when this seems impossible. Thanks also for your prayers and meditations. I can feel them every day.
Love to all,
Mandy
"For God, who said, "Let there be light in the darkness," has made this light shine in our hearts so we could know the glory of God that is seen in the face of Jesus Christ."2 Corinthians 4:6
Monday, March 19, 2012
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