Mayo Clinic Update

The past few weeks have be so great! I've felt more like myself than I have in a year! I've had more energy, clearer thoughts, stronger muscles, a stronger immune system! I have been loving every minute. I've been spending 2-3 hours with my physical therapists three times a week, and I am making so much progress!! I can actually see my muscle growth, and its helping me get through every day!! I'm crossing my fingers that this improvement lasts...or maybe that it sticks around forever?! It's been so much fun for me, I don't think I have ever appreciated life as much as I do now. I walk up the stairs without pausing for a break, and it feels so great, it just makes me happy. And then I get to the end of the day and I'm still just standing around doing things....happy again! I can't believe how much I love every day and every minute, and how much I appreciate the smallest things. I hope I can always keep this perspective! And I also hope that I can always keep this strength! Either way though, I will always be grateful for these days. I have no idea where this medical craziness will go in the coming years, so I am promising myself that I will do all I can to appreciate each day, treasure every hour with friends and family, and make the most of every situation, no matter how I'm feeling.

Mayo Clinic
Last week I had a strategy call with Mayo Clinic. I was really grateful, because Dr. Cortez, the resident (who i learned is actually a fellow, with 4 years of neurology experience), took so much time to answer my questions and explain things to me. She is very smart about my case, and seems to know almost as much as I know about my history, which is impressive! She isn't afraid to consider my ideas or my questions, or to discuss things openly with me. I absolutely love that, and I am so happy to be working with her.

She said that she and Dr. Wingerchuk have spent time reviewing my case, looking at my scans, getting radiologists input, etc. She said that the first question they want to answer is whether or not the spots in my lungs are related to the lesion in my brain. She said of course its possible they're not related, but that it is a very important question to answer, and they want to explore that first. She mentioned the possibility of a lung biopsy, but said they first want to see the CT scans of my lungs, along with the radiologist reports and the doctor's notes from my pulmonologist. They will have their radiologists review the scans, and decide if they think we need to pursue this further. If the lungs spots are related to the brain lesion, that would most likely be neurosarcoidosis.

I asked her if they definitely think the brain lesion is related to all of my symptoms, or if it was possible that there are two different things going on. She said its definitely possible there are two different things going on, and even possible to have two different rare things going on. But she said it is much more likely to be one thing, so for right now, they are trying to be open to the possibility of one condition that is very atypical.

We discussed the original myasthenia gravis antibodies that Mayo clinic found last year. One of them is a striated muscle antibody and one is a muscle modulating antibody, which were both positive. I asked her if that could mean nothing; if it was a false positive like the false mono, rocky mountain spotted fever, and typhus antibodies that kept turning up for me. She said that she thinks they definitely mean something, but they aren't sure what. It isn't myasthenia gravis, because the EMG (muscle test) was normal. But these are neuromuscular antibodies that turned up and the same time I was having extreme neuromuscular symptoms. She thinks they are definitely related, but we don't know exactly what is causing those antibodies. It's possible that those antibodies are not currently active (they turned up positive last year when I couldn't walk) and its possible that the EMG would have been abnormal if they would have done it back then. She said that if I ever have a relapse of severe muscle weakness, they will repeat all of these tests to try and get to the bottom of this. She said if those antibodies were currently positive and if I were still having severe neuromuscular symptoms, we would treat it with chemotherapy to try knocking out those antibodies. But for now we just wait, and hope this never comes up again.

Diagnosis?
Mayo Clinic is the number one producer of research on Tumefactive Multiple Sclerosis, and Dr. Wingerchuk is one of two MS specialist neurologists at Mayo Clinic Scottsdale. So I was really interested to hear what they had to say about my diagnosis and the possibility of Tumefactive MS.

Dr. Cortez said that Dr. Wingerchuk is "hesitant to call this MS anything" because of how long my brain lesion has been enhancing (over a year now) and the fact that it hasn't shrunk or responded to any treatments. I asked her what they do think it is, and she said the first thing they are considering is granulomatous disease, most likely to be neurosarcoidosis. The second thing they are considering is a low grade glioma, which is a slow growing tumor. She said that our first order of business is to chase the lung spots and see what we can come up with to prove or disprove neurosarcoidosis. The next thing would be to repeat my MR spectroscopy, which was inconclusive the first time we ran it. The spectroscopy measures the chemical makeup, etc in the brain tissue and usually gives clues about whether or not a lesion is a tumor or MS. Mine told us absolutely nothing, and she said the hope is that they could produce a more accurate result since it's been a year of the lesion being active in my brain.

She said that Tumefactive MS and vascular lesion are both still possible, but they are looking highly unlikely. The mayo radiologists looked at all the scans from MD Anderson, including the vascular scans, and they disagree with the idea of a vascular lesion. They did agree that it looks like a Tumefactive MS lesion, but the neurologists say that's nearly impossible when you look at the scans from one year ago until now. This is either an extremely rare presentation of an extremely rare disease, or it's not Tumefactive MS. But this would also be atypical for neurosarcoid or a glioma/tumor.....so either way, we are chasing something extremely unusual.

I am trying to keep an emotional distance from all of these possible diagnoses. This has been such a long process with so many diagnoses suggested and then retracted. I can't worry about the possible diagnoses, because they are all different, and I don't know which one to worry about! Lol. For now, I am just loving how I feel and the progress I am making each day! I am so grateful and relieved to feel more like myself and have loved having the energy to see my friends and family more often. I also just got approved to work ten hours a week and I'm really excited about it! I don't know what kind of job I can find for ten hours....but even the approval is a sign of progress, and I'll take it!!!

Hope everyone had a wonderful Christmas! I actually had soooo much fun this year. Possibly my best Christmas ever. I'll try to post a few pics and tell more about this later! :)

Thanks to everyone for your support and prayers!

Mandy

If this were a book, I wouldn't read it!

Man, I have never been such a slacker at writing an update! It would be one thing if I just simply forgot. But I didn't. I've literally been avoiding it every day since my last entry. It has been on several to-do lists, and I have come up with dozens and dozens of "important" reasons to put it off. Again. And again. Thank you to those who have emailed and texted to check in on me in the absence of an update.

A lot has happened, actually. I think I am just so frustrated with it all, that I don't want to face it intentionally. In the past, I've thought that my complex medical mysteries might make an interesting book one day. But now I'm to the point where I think this is the dumbest story I've ever heard, and I'm ready to be done with it. If this were a book, I'd toss it in the trash about now. And I'd tell everyone I know not to read it.

Anyways, for the sake of my own record keeping, my own journal, and to those of you who follow my blog and especially for those who have inquired about me recently, I am here to give an update. I hope. ;) You never know, something more pressing might come up before I finish this!! Lol!

THE UPDATE:

Barrows

For any who missed the earlier update, my Barrow's doc referred me to Mayo Clinic for a second opinion. He says that after a year of MS treatments, this brain lesion has done nothing to respond like an MS lesion, and he is doubting our diagnosis, and wants a second opinion. He basically un-diagnosed me with MS. That is FANTASTIC news, honestly! But....then what is it?? Honestly, we don't really know. All the usual culprits are on the table: Tumefactive MS, Lymphoma, Tumor, Neurosarcoidosis, now vascular lesion. There isn't any way to know for sure. Like I said, this is a very dumb story. It is repetitive, the plot never changes, the issues never get resolved. If this was a book, I wouldn't be reading. Congrats and thanks to those of you still reading. I honestly can't promise that this story is headed anywhere!! 


Mayo

l was really nervous to go to Mayo clinic, because I had a rough experience when I went there for an opinion back in December of last year. But my Barrow's doc told me this really was the best place for a second opinion, and he recommended that I give them another chance. I still can't say if I'm glad to be at Mayo, but at least my first appointment was bearable. They originally told me it would be a few months before they could fit me into the schedule, and I asked if there was any way to be seen earlier. They said if I agreed to let a resident participate in my case, I could be seen in a matter of weeks. The resident would see me as if I were her patient, and then the doctor would come in to see me too, and they would both work on my case together. I agreed, and actually felt lucky because two docs are better than one, and a teaching case often gets looked at more thoroughly. I was also lucky because the resident was very smart, attentive, caring, didn't critically grill me or try to second guess me. My meeting with her was agreeable and constructive, and she actually caught up on things very quickly and seemed to understand what is most important and most mysterious about my case. When the neurologist came in, his approach felt critical and distanced more than anything, but I know he is smart, and I'm grateful I get to have both of them looking at my case.

They didn't have a plan for me on the spot, because they wanted to look through my MRIs and the additional records that I brought. They wanted to talk to their radiologists about my MRIs to see what they think this might be. They also wanted to take time to consider the possibility of a biopsy. I clearly explained the reasons we haven't done this: the location is bad, the lesion isn't growing right now, and I'm getting better not worse. They agreed that all of this makes sense, but said that it is still an important consideration, and they need to discuss it. They did agree with my being off MS therapies for now, since we aren't certain what this is. When it comes to the possibility of a vascular lesion and the vascular MRIs, the resident said they need to take a closer look and officially decide "which camp they side with." The neurologist basically said he was glad I didn't presume to think they would agree with that idea. (His tone was even ruder than his words.) I honestly don't know what to make of docs like this. I feel like it doesn't matter how agreeable I try to be, I'm going to walk away feeling bad about the conversation. Praying hard that my heart can handle this, and most especially that this will bring some answers! They did order an EMG (muscle test) and we have a call later this week to talk about the strategy.

Physical Therapist

Back in September, my leg muscles started acting up again. I was ok walking, but things like rising from a seated position and climbing stairs became increasingly difficult. I thought it would pass, and to some degree it has, but I still feel pretty weak by the end of each day, and I am ready to be done with that nonsense!! So I started going back to my physical therapist to get some help identifying the problem muscles, and getting things back on track. I'm actually really excited about this. I am feeling more like myself this past month, and this takes me back to the days before getting sick, when I was going to the gym three times a week. Hey, regular gym, or physical therapy gym, it's practically the same, right?! Hahah...almost. My PT has given me three different lectures about not pushing too hard, and taking things at the prescribed pace. He's right, but I'm ready to just push through it all, and get back to my normal self. I'm actually loving the workouts and the chance to make more progress in my journey towards recovery.

CT Scan

Back in August, I had a chest CT scan done when I was horribly sick, and my PCP thought I had valley because of my weight loss, sickness, and a nodule on my x-ray. He sent me to a pulmonologist who ran a chest CT scan. The scan showed "multiple" spots in my right lung, and we weren't sure what it was. Follow up blood titers were negative for valley fever, so the neurologist and pulmonologist agreed that it was nearly impossible that had valley fever, and ruled that out. As for what they thought the spots were, they both were uncertain. So we planned a follow up CT scan for December. I just got results back, and it looks like half of those nodules have resolved, and half of them are still there, with the largest one measuring 5mm. There is also a separate 1cm triangular spot in my right lung that looks like atelectasis (scarring or blockage) but they aren't certain. As for the many resolving spots, the radiologists think this means it was something inflammatory or infectious. The pulmonologist...even in all my days of baffling docs, I've never seen one with so little to say. He doesn't have an explanation for what this is or isn't, even though I pressed him for a better explanation of his assessment. He just said that whatever it is, its resolving, which is good. He told me that means these likely aren't cancerous spots (He seemed very relieved...apparently he was worried about this??) But he still wouldn't attempt to guess at what it might be, or have been. He kept telling me I need to talk to my neurologist about this, and even gave me a copy of the report with his signature on it and told me to hand it to my neurologist. 

The CT report randomly mentions residual thymic tissue, and I asked the doc about that and why it was on the report. He said that that's one of the things he wants my neurologist to see. He said it could be related to something like myasthenia gravis, which ironically, is one of ten random things I test positive for. The report also mentions mild pericardial effusion (fluid on my heart), which also showed up on the previous CT scan.

The doctor ordered another CT scan for 8 months out to check on these spots, and especially that 1cm triangular spot, to make sure that there is nothing more serious. I'm hoping the unresolved nodules won't cause any problems, but glad they are going away. It is possible that some of the remaining spots are scars from the resolving chaos. 

I doubt this  lung complication is related to my bigger picture case (though its possible) but it could explain why I was so sick from July-September, and that's an answer in itself! I'll take all the answers I can get...even vague and non-specific ones!!

PCP

I recently had a meeting with my PCP to get him updated on everything that has been happening. I also needed him to run some tests to find out why my hair is falling out in handfuls!! In the past six weeks, I have literally lost almost half of my hair. Fortunately, I had a TON of hair to start with, so it's not noticeable, but it's been a really frightening experience. Hair loss is a side effect of Tysabri, and it is also the body's reaction to stressful experiences like my Tysabri reaction, or even the chaos in the past year. But it seems pretty extreme, so talked to my PCP about it. He ran a bunch of tests and found that my Vitamin D is extremely low. So I am on high dose supplements and hoping that will help with my hair, and also my fatigue! It would actually be GREAT if this simple fix could improve my fatigue! 


Vascular Lesion?

Well the idea of a vascular lesion was promising, but it turned out to be kind of a bust. I went for the MRI shortly after my last post. It was a different kind of MRI, and it was done at MD Anderson. I was told I wouldn't have results for a week. Then the next day, radiology called me back and said they wanted a closer look at some things, and could I come back the next day for another MRI.

I arrived at my follow up appointment with great anticipation, hoping this would finally be the day of answers. I actually tried very hard not to get my hopes up, because the doc wasn't very helpful the first time I met with him. When the doctor walked in the room, he said, "Well, we still think it is what we thought it was. We think it's a vascular lesion. Here's the report that says so." I said, ok great, what kind of vascular lesion is it? He said, "Well we don't really know, that's not our area of specialty." I said, ok, well what is the standard for following up on this? "I'm not sure, but Barrows is the best and I bet someone over there can help with this." I said, ok great, but can you tell me what the radiologist was looking for when he called me back for a second MRI the day after my first? "Well I'm sure he just wanted a better look." I told him it seemed pretty specific, and that the radiologist and the MRI tech had been on the phone for most of my MRI, and it seemed like they were looking for very specific things. He flat out said, "yeah, I don't know." I said, well can you ask him and let me know? He said yes and that he would call me, but he never did. 

After that completely useless meeting, I took a copy of the MRI disk and the report to Dr. Najaki, the Barrows neurosurgeon who has been keeping an eye on my MRIs throughout the past year. He is a chief surgeon at Barrows and deals with all sorts of brain lesions, tumors, and vascular malformations. He reviewed the images and said he isn't convinced, and he would not accept that as a diagnosis. Also, as I mentioned earlier, Mayo wasn't convinced either. So I guess it's still a possibility, but it doesn't seem very likely. As my little sister would say, "What a bust!"

Anyways....

Anyways, there are more updates to come, but if I don't post this tonight, I probably will never come back to it! So for now, there is the update, and I will be back to write again hopefully within a week. Thanks to everyone who follows me and my thoughts on this journey. Like I said, if this were a book, I would have thrown it in the trash by now! So I consider you true friends for caring enough to face this fragmented, redundant chaos with me. It's been a rough year for me, and it has helped so much to have so many amazing people on my side. I love you all! Thanks for your thoughts and prayers. I am making progress every day, and I know our prayers are being heard. 

Mandy

New Diagnosis Suggestion

Last week I met with an internist from MD Anderson. He is just an internist, but he has access to the neuro-radiologists who specialize in looking at Tumors and Lymphoma. The doctor wasn't especially helpful or hopeful that he could help solve anything, but he did have the radiologist look at my scans and give an opinion. The radiologist says he doesn't think it looks like a tumor or a lymphoma. Or MS. That is potentially GREAT news, but it is also very confusing.

From day one, every doctor and every radiologist has had a different opinion about this; some of them are confident it looks like MS, some emphatically say it's not MS, one radiologist says it looks most like lymphoma, the hospital docs wanted to do a biopsy because they thought it looked more like cancer than MS...so confusing as the patient! Obviously, whatever it is, its unusual. I feel like I have to be the doctor, I have to decide who is right and how to proceed, and it's very overwhelming.

The good news is that the radiologist did have a recommendation for a possible diagnosis we can look into. He wants to look for a vascular malformation, like an AVM (arteriovascular malformation). An AVM is a "tangle" or mass of abnormal blood vessels in the brain. AVMs occur in less than 1% of people. It is often treated with surgery, embolization, or Gamma Knife (radiosurgery). For anyone who wants to know more about AVM, you can google it, or you can look at one of these links: http://neurosurgery.ucla.edu/body.cfm?id=110 or http://www.irsa.org/avms.html If this is what it is, it would be challenging because it is in the motor strip, and surgery or gamma knife, or embolization would likely be impossible. I'm not sure. They have a scale for grading these vascular "tumors" and depending on the grade, they may not have to treat at all. More details about that are included in the links above.

Although an AVM isn't simple, it was an interesting experience for someone to even suggest something like this. From day one, I have been told this was most likely the type of disease that would change my life forever, or possibly take my life. Now here is a doctor suggesting a disease that isn't progressively debilitating and recurring like MS, and isn't usually life-threatening like a lymphoma or a tumor. I didn't even know how to take that at first, and as I continued to process what I was feeling, I realized that this is the first time I have been given any reason to hope that there might be a way out of this. What a sweet, unexpected, liberating feeling. I realize it could be dangerous and disappointing to hope for a thing like this, but honestly, every emotion in the past year has been the unfounded result of sheer speculation. So when for once, the speculation is a hopeful one, why not grab onto it and feel it for as long as possible?! It may be ripped away as quickly as it was given, but this honestly feels like a speck of warm sunshine creeping into the arctic. It is the first time i have been allowed to consider something hopeful, and it's a relief to feel that, even if it's temporary. Nobody has ever offered me a possibility that had a happy ending. So for today, I am hoping. Truly hoping. Not just for a less-than-tragic outcome, but truly for a happy and healthy outcome.

Tomorrow I have a special type of MRI to look for a vascular malformation like this. Reasons it is unlikely include the fact that I have oligoclonal bands in my spinal fluid, the fact that I have had an unremarkable venogram in the past, and the fact that I have been sick for a year. But whatever this is, it's unusual. So why not be an unusual AMV? I'm crossing my fingers.

I won't get results of this MRI until next Monday (November 12th), when I meet with the internist again. I'll be sure to give an update. Still looking into options for a new doctor to follow my case. If this AVM things turns out to be right, that would make things 1,000 times simpler. I think....  ;)

Mandy

Back to The Drawing Board

I have been avoiding writing an update for a couple weeks now. Last week was quite possibly the most emotional one I've had in this journey so far, and I'm only just starting to recover.

I met with my neurologist on Monday, to recap after my reaction to the Tysabri and my stay in the hospital. To sum up the meeting, we are now back to the drawing board with everything. I am looking for a new doctor, we are chasing a mystery diagnosis, we are trying a just-in-case treatment, we are ordering some tests...ugh. My doc isn't confident we have the right diagnosis, and every plan we have made up until this point has been tossed out the window. He is referring me to mayo clinic for a second opinion, and he is hoping a doc there can help us solve this puzzle. He all but quit my case, telling me that he still stands by the reasons he originally thought this was MS, but saying that nothing about this has progressed like MS at all. He said there are too many puzzle pieces that he doesn't know how to make sense of, and feels very strongly that I need a fresh set of eyes on my case.

I deeply respect his honesty, but I also feel completely lost and defeated. This feels like a cruel, never-ending labyrinth. I am so weary of all the uncertainty. I don't even care what the answers are anymore, I just want answers. And now I feel like I am facing this alone. I am sure there is a doctor out there somewhere who can make sense of this, but parting ways with Dr. Okuda is one of the most frightening things that could happen. He has been my champion, my constant voice of reason, the creator of all my strategies. Dozens of crazy symptoms could crop up, and I could stay steady because I knew our plan, and I knew our backup plan. And I knew that he would talk straight with me, tell me when something was a problem, tell me if he didn't know something, tell me if it was time to abort the plan. I guess that day has come.

The biggest mysteries at this point are that my lesions have been enhancing for a year (MS lesions typically stop enhancing after 6-8 weeks) and my lesions have failed to respond to every treatment we have tried. It's not to say we are facing the worst case scenario. It's just to say that nothing is a guarantee. All options are on the table, as far as a diagnosis. I am soooooo ready for this nightmare to be over. And instead, it's starting over. It's like someone just hit rewind, and the whole thing is about to play again. I just can't believe it. It's been a year, and we are standing back at square one. Strangely, today marks the one-year anniversary of my original square one. My first MRI, my first day in the hospital...it all happened on October 31st. It is so ironic, it hurts.

I have never prayed harder in my life. I just want this insanity to end. I'm taking a little break from being brave for awhile. As my friend Tara Schlappi Bodrero and her family say, I'm taking a "brave break."  It's been awhile since I've had one of those, and I think it's long overdue. Still praying, still hoping, still walking forward, but I can't promise to be brave. Not for awhile anyways ;) 

Thanks to everyone for your thoughts and prayers. I need them.

Halloween!!

Last Halloween was by far the scariest of my life!!! First full day in the hospital, first MRI with frightening results, 30 vial vampire blood draw...couldn't have planned a better scare!! I can't believe it's been a year!!

Home from the Hospital

Things kept getting worse, and I landed in the hospital for a few days, feeling horribly sick, and my head pressure/fuzziness completely out of control. We found some meds that helped, and I'm resting at home now. My doc says he doesn't think Tysabri is an option after this, which leaves us nearly out of options. I have a meeting with him on Monday to try and decide on a new plan. Honestly, I am so frustrated with all of this, that I'm ready to just do nothing for awhile and see what happens.

My neurologist wants to send me to mayo clinic or somewhere else for a second opinion. I'm really grateful my doc is honest about the fact that we've sort of hit a dead end here, but it leaves me back at square one, searching for a neurologist who knows how to handle my case. It's a familiar-feeling nightmare! They have already sent the referral over to Mayo, but honestly, I had a really bad experience there last December, so I'm pretty nervous about it. In fact, the worst experience I had in trying to find a doctor was at Mayo. I'd really like to find somewhere else, but most docs won't have the slightest clue what to do with my case. I've been trying to do some research into other options, but so far I'm not having any luck.

In the past couple months I have met a handful of friends online who also have Tumefactive MS. Some of them are actually on chemotherapy, which we have discussed as a last resort treatment for me. I just don't know if I want to hit this so aggressively when we are not confident of the diagnosis....And the only way to be confident is to wait for some insane, telling symptom, or to do a biopsy, which could paralyze something. What would anyone do in this situation? It's an impossible spot to be in.

Looking forward to the strategy meeting on Monday, although ultimately, next steps are going to be my choice, and I have no idea what is best.... Praying for answers. Hopefully clear ones!

Still Sick

I have been so sick all week, I haven't felt this miserable in months! It's like I have some horrific drug or virus inside of me. My head is swimming, fuzzy, and my head pressure is worse than usual. I am so weak and off balance I can barely walk around without assistance. Sometimes I can barely talk because I feel so awful. My bones hurt, my joints hurt, my head hurts, i'm nauseous...can you tell I just need to complain for a minute!?! I'm actually not sure if what I am feeling now is still the Tysabri. I'm thinking the Tysabri reaction may have triggered some sort of setback. I really hope not, but it's hard to tell. (To be fair, I should mention that I was feeling funny all day before the infusion, so maybe this would have happened anyways.)

It's crazy, every time things get unbearable, I have to coach myself back into a place of patience and willingness to face this. It is honestly harder than i could ever explain to not just fall into a depression, run away (i'm not sure how I'd accomplish this, but it's tempting to try!), or lash out somehow. It always surprises me when it comes back this fiercely. Somehow I think once I conquer a day of feeling like a 9/10 on my miserable scale, that I've mastered it and it will be easier the next time around....but it's actually not. I think I have some degree of tolerance and skills for dealing with anything up to a six. I live in that space alot. But man, that 9/10 just kicks my butt every time. I so hate this. Here's to hoping this is a temporary setback.

Tysabri

From my awesome friend, Bea Robinson!! <3

Reaction to Tysabri

I had a reaction to my Tysabri infusion today. Nooooooo!!! I'm so frustrated, I need this medication! Not sure what happened, I just suddenly couldn't breathe or think or talk or see straight. All the muscles in my hands and arms were clenching up. It was pretty awful. Fortunately, I was getting my infusion at Mercy Gilbert, so they took me straight to the ER. I was there for almost five hours, they gave me Benadryl and Baclofen, did a CT to check for a brain bleed, and after awhile things started to calm down. Barrows was at the ready to have me transferred and admitted, but I really did start improving after several hours, and I HATE sleeping over at the hospital. I couldn't be more relieved to be back home now.

Still feeling like I got hit by a truck, but the most frustrating thing is not knowing if I'll be able to continue with this medication. I really need it, and I'm afraid of next steps without it. I'm really hoping my doc will let me try this at least once more. Blah.

85 Skin Pricks, 17 SHOTS, an IV, and an MRI

Yesterday I had 85 Skin Pricks, 17 Shots, an IV, and an MRI! And today I have a blood draw for some additional testing. We are trying to investigate my crazy head pressure, so my doc sent me to an allergist to see if that could be contributing. The 85 skin pricks in my back turned up nothing, so they moved onto shots! They literally gave me 17 shots in the arms. The nurse hit me with a syringe, threw it in the sharps box, then pulled out the next syringe. I honestly cried last year when I got my one pathetic flu shot! I was suuuuch a baby! I'm not gonna lie and say I'm not still a baby about needles....I definitely am! But I think seventeen shots seemed so surreal that I didn't know how to react. The nurse felt so bad, she promised I'd get a really good "prize" for being so good! Haha! She brought me TWO stickers, a lollipop, and a pack of silly bands! It was pretty funny.

Fortunately or unfortunately (I haven't decided which!) the shots also turned up no allergies. That's a good thing, but it was our safest guess on the head pressure...so I guess we are still unsure what is causing that. I know it probably seems crazy that I have a big lesion in my head and we are wondering what in the world could be causing head pressure....haha. But the normal meds to help this haven't been working, so the docs want to rule more things out.

I did have another MRI yesterday (which always includes a contrast IV). I don't have results, but I looked at the disk myself, and there don't seem to be any major changes for the better or the worse. If the official report is worth mentioning, I'll definitely post about it. But I'm guessing its all the same. The important MRI will be in November, when we'll first be able to tell if the Tysabri is working.

Tysabri!

Tysabri appointment today! Everything went well with the infusion. It took forever because after everything is done, they make you stay an extra hour to be "observed." But no major reactions, so for now I'm cleared to keep taking this! I'll have these infusions once a month, and it will take at least eight weeks to know if it's improving my brain lesion. Fingers crossed and saying prayers!

Barrow's Appointment: August 28th

I'm feeling a little heavy hearted this week. I have a friend in the hospital, a friend of a friend whose baby just drowned, a friend who just miscarried a baby, a close and important political campaign that was lost, and a close friend who is going through an excruciating breakup. It's times like this that really put life into sharp focus, and remind me of what's most important. I can't say how much I love the people in my life. My family, my friends...I don't know what I'd do without them. I wish there was more I could do to help with hard times like these. One thing I do know about life is that it's not easy. Big trials happen, and there is no easy way to get through them. But I also know that God is never far, and we are never truly alone, whatever we may be going through.

This week has also been tough because my family moved to a new house in a new town. For now I'm living with them, so that means a change for me too. It's been physically and emotionally exhausting on us all. Fortunately, the move brings us closer to my married siblings, and closer to my mom's work, so ultimately it will be a good thing.

This week's appointment at Barrow Neurology was important, and it was great to talk strategy with my neurologist. That always puts my mind to rest because I know there is a plan, even if there aren't answers. My neurologist said he is constantly "re-inventing" my case because there is nothing about it that has been predictable, nothing that fits in a textbook, and he wants to make sure we are not missing anything important, or working with the wrong diagnosis.

UNEXPLAINED CT SCAN

Because of the lung nodule that showed up on a recent X-ray, my pulmonologist ordered a CT scan of my chest to get a closer look. The CT scan showed "multiple spots" (greater than ten) on my lungs. My antibody test for valley fever came back negative, so my pulmonologist and my neurologist are confident these lung spots are not caused by valley fever. They both said there is a .01% chance that i could have valley fever that doesn't produce antibodies, but with odds like that, we are pulling it off the table. So the lung spots have no explanation. I will have another chest CT scan in three months to check for any changes. I asked my pulmonologist if he thought there was any way this could be connected to my bigger medical case, and he said that was a good question to ask my neurologist. So I did. The neurologist says the only thing he can think of that would connect my lung spots and brain lesion would be neuro sarcoidosis. But he said it isn't acting like that, so he highly doubts it is. His conclusion about the lung spots is that he has no explanation for them. He did say its possible they are granulomas from something I inhaled in the past, which would mean they are currently harmless. The follow up CT will hopefully make that more clear.

ANOTHER RANDOM DETAIL...

Another thing we have no explanation for is weight loss. In a matter of about six weeks, I lost fourteen pounds despite eating and resting regularly. Valley Fever would have explained this weight loss, but now we are saying I never had valley fever. My neurologist admits that this is another thing he has no explanation for. As frustrating as that sounds, I actually prefer his honesty.

BRAIN LESION DISCUSSION

As for the brain lesion, my doctor says there have not been any significant changes. It is still the same size, and still enhancing as strongly as it was when we first found it. What we thought was a slight improvement before, actually wasn't significant. The most important thing right now is still addressing and controlling this lesion. My neurologist said there are plenty of doctors, including the docs at St. Joe's, who would want to do a biopsy at this point. But we talked (again) through all the reasons we should wait. He said it doesn't look like neuro sarcoidosis because steroids would have dramatically improved the lesion, it doesn't look like lymphoma because steroids would have dramatically improved the lesion, and it doesn't look like a brain tumor because there is a second lesion (the chances of having two tumors at the same time are very small) and because neither of the two lesions have grown in the past few months. Overall, it's pretty clear that this isn't acting like any of those things. But then I asked the obvious question that we have discussed a million times. I said, "how likely is it that a tumefactive MS lesion would also fail to improve with steroids, not to mention plasma exchange?" He said that's why he has to keep reinventing this diagnosis and strategy. Because steroids should have improved an MS lesion too, and they haven't.

DIAGNOSIS DISCUSSION

Dr. Okuda (my neurologist) said he is still confident that this is Tumefactive MS. I asked if it could be another form of demyelinating disease, or another sub-type of MS. He made a joke about how he has given this question "a little bit of thought" in the past. Haha. I do know that he thinks about my case often and that he has considered it from every angle. He said that within the MS family and other demyelinating diseases, it is the size of my lesion that gives it away. He said this large size is the calling card of tumefactive MS. If it's a demyelination, or MS, he is confident it's Tumefactive MS.

STRATEGY DISCUSSION

I asked Dr. Okuda what the research says about lesions that enhance as long as mine. To his credit, he told me the truth. He said there isn't any research about lesions that enhance this long. He said that while investigating Tumefactive MS, he has found doctors who have seen this before, but it seems to be extremely unusual. He said that this scarcity isn't necessarily a fair read though, because many doctors treat these lesions with chemotherapy, which would stop the lesions from enhancing by shutting down the immune system and stopping the body from attacking it's own brain tissue. He said chemotherapy is something he is trying to protect me from. For now we are going to move forward with the Tysabri and pray that it works. Dr. Okuda is actually really hopeful, even confident that it will dramatically improve my brain lesion and my quality of life. I was glad to have this discussion because Tysabri seems so extreme and risky to me. But knowing that our next step could be chemotherapy makes me very grateful that we have something else we can try. I am also very grateful for a doctor who is doing everything he can to protect me in this uncertain battle. I honestly wouldn't trust these decisions to anyone but him. I think there are few doctors out there who could resist doing a biopsy or jumping to chemotherapy after so much time has passed without resolution. We do know there is a chance that we are completely wrong about the diagnosis, but we have enough reasons to be confident in our plan, that we are comfortable taking these precautions.

My first Tysabri treatment is this week on Wednesday. Dr. Okuda says we should know if it's working within about eight weeks. We'll continue with regular MRIs and hope that things start to improve! My next MRI is actually in a couple weeks, but that is just to keep an eye on things like usual. My November MRI should tell us if the Tysabri is working. Fingers crossed and praying that it does!

Thanks to everyone for reading my blog! I appreciate the emails and messages I get from several of you. It really does mean alot. I apologize for any that I may not have responded to. When I have a rough week, a million details get lost. But please know that I do read every message and it means alot! To those of you with Tumefactive MS, keep fighting the fight! It's often very confusing and overwhelming, but every day of life is worth the struggle. Message me when you need to talk. mandyclive@gmail.com

All my best,

Mandy

MRI Results and New Treatment

MRI RESULTS

I don't think I ever posted results from my July MRI. They actually did a 3Tesla MRI this time which is much more powerful than a regular MRI. The images look like photographs of my brain, which is kind of crazy. I told my mom they looked like autopsy photos because they were so detailed....she didn't appreciate that much!! Haha.

Interestingly, it seems that my last MRI report may have been wrong. The radiologists compared my new scan with previous scans, including a 3Tesla scan from February, and the report was "no change" in either the lesions or the enhancement. My doctor says we will continue with regular MRIs to keep watching this. At this point we are approaching ten months of an enhancing tumefactive lesion, which is something you only read about in research papers, if at all.

NEW TREATMENT

Given that my lesion has failed to respond to every treatment we have tried....solumedrol, prednisone, plasma exchange (plasmapheresis), and Avonex, my neurologist has been more insistent than ever that we get me onto Tysabri. I have some pretty overwhelming cognitive symptoms that come and go, along with extreme fatigue, muscle weakness, numbness, nerve pain, nausea, head pressure, etc. My doc thinks there is a good chance that if we can get the lesion under control, I may also be able to get my symptoms under control. The hold up so far has been my insurance company. Tysabri is usually reserved for people who have had MS for a longer period of time and who have stopped responding to other MS treatments. Convincing them to approve such an expensive medication when I have been sick for less than a year has been a serious challenge. But I do have good news....it is finally approved!!! My first Tysabri infusion will be September 5th. I'm excited and hopeful, but also really nervous.

TYSABRI according to me.....

Tysabri is a pretty serious drug, in fact it is considered a black box drug because it has some risky side effects, including PML, a life-threatening, untreatable condition. You can't read anything about Tysabri without seeing this warning: "Since TYSABRI increases the risk of PML, a rare brain infection that usually causes death or severe disability, it's generally recommended for patients unable to tolerate or respond well to another therapy." Haha...that's pretty comforting when you keep seeing and hearing that over and over again! In some ways, even though I knew I needed this, I am not upset about the six months it took for my insurance to approve the medication. It has taken me that long to settle with the fact that we have tried everything else, and to accept that I really do need this treatment if I am going to get better...now we can only pray that it will work!

Tysabri is different than other MS treatments, because rather than delivering an interferon or other medication, it is actually delivering monoclonal antibodies. It does affect your immune system, though they say it is "immunomodulating" not "immunocompromising" like chemotherapy. One of the things it does is to modify the blood-brain barrier so that white blood cells and antibodies can no longer attack brain tissue. This is why we are thinking the Tysabri might help us get my lesions under control.

Because Tysabri is in the highest class of black box medications, the prescription has to go through the TOUCH prescribing program, which is a government regulated, and I had to be approved for the medication. It is nice because the Touch program makes sure that every facility giving the infusion is specially trained in giving Tysabri, and it collects regular updates from patients so that if there ever were to be a symptom or change that would indicate a problem, they would probably catch it sooner than later.

Tysabri is given once monthly, and I go to a doctors office to get the IV and infusion. They say it takes about an hour for the treatment to run, and then they always keep you for an hour to observe any side effects. I'm finishing off my valley fever treatment and then I'll be having my first infusion....I'll definitely write about it then!

I do have an update on the Valley Fever stuff. I had a chest CT which gave us another unexplainable puzzle piece (hooray!) It actually has nothing to do with Valley Fever. Or at least it doesn't look that way. Anyways. I'll write that update later because for now I need to sleep!

Mandy

Update: July 25 2012

Wow, so much time has passed since I've made an update that I'm not really sure were to begin. I guess not much has really happened, other than being constantly sick, but I'll sketch out the basics. There are a few things that are new, and one surprising bit of information.

Thanks to everyone who has emailed me to check on me in the absence of a blog update. I have also really enjoyed getting to know several of you who have emailed to tell me your own stories with Tumefactive MS. I have been shocked to realize just how rare this disease is, and how dramatically it has impacted those who have it. In almost every case I am told that the Tumefactive MS patient seems to be the only one in their area, that they have not heard of any other cases, and that their doctors seem to be playing a little bit of guess work. Sadly, I have not heard from one Tumefactive MS patient with a simple story. They are all stories of extreme suffering, stress, complicated diagnoses, and complex decisions about biopsies and medications. It honestly hurts my heart to hear these stories, but it also gives me a strong desire to help spread the word about this disease, and to find a way to connect these patients to one another so we can all figure this out together. I'm giving that some thought, so stay tuned, and definitely keep sharing.

One thing I have learned from talking to so many other Tumefactive MS patients is that most of them have had a good response to steroids. Guess that answers my question as to whether or not I am just "special" or if Tumefactive MS is "special" when it comes to being steroid resistant. Guess it's me. I'm the "special" one. Big surprise, right?? Haha. Sadly, I have met one other friend with a tumefactive lesion that has been enhancing for several months, like mine. Looks like they might go for the biopsy, though I need to check in and see what she has decided. Nothing about this is easy, that's for sure.

As for my recent health, it's been pretty up and down. Sadly the ups are short lived, but I am grateful that they come at all!! I was pretty dramatically sick through all of March, April, and most of May. Things started to even out in late may/june, and i even took a trip with my sister Mariah to NJ where we had some great days with two of my cousins, seeing some of the sites in NY and DC. It was actually a really great experience, it taught me alot about putting aside my physical discomforts and focusing on enjoying life. Sort of a chronic-illness bootcamp! Haha. It was a little disheartening spending whole days sleeping, starting every day late and ending early, but we did have alot of laughs, and I will always treasure the time I got to spend with my sister Mariah. She is the one and only reason I went. There were other things I would have liked to be considerations. But weighing out the physical cost and the potential consequences, she really was the only consideration. I love that girl so much. Being sick draws life into such a sharp perspective, and there is nothing more important to me that taking every opportunity to be with my family. When I am with my nieces and nephews, or my little sisters, I try to think of nothing but them. It honestly gives me strength in ways I can't explain. There is something about love that is more powerful than pain, more powerful that suffering, and that can sometimes put our minds and bodies into autopilot so that our hearts can access whatever energy we may have within us.

Sadly, but not surprisingly, I had a pretty rough patch once I got home from the trip. I immediately caught some sort of horrible flu. And unfortunately, I am stilllll sick. It's been almost five weeks now. I have been nauseous, achy, exhausted, can't think straight, can't sleep, losing weight for no reason. Some of those are nothing new, as I've been sick pretty constantly since this all started. But it's felt a little extreme, and the nausea and weight loss are new. I have asked my neurologist if it's normal with MS to feel sick this often, and he said that with normal MS, it's not. (Tumefactive MS is kind of a wild card) It can be normal to feel horrible all the time, and fatigued all the time, and to have regular bouts with being sick....but not this regularly. And that was all. He basically told me he wants me off the Avonex and onto the more extreme Tysabri immediately. And that was that. Apparently that's going to be our saving grace and fix everything...lol...I certainly hope that's true! He really has been insistent about it from the beginning. The insurance is the only reason we took a detour.

Fortunately for my health and my sanity, I have a PCP who has more time for the smaller details (which are HUGE details for me, since I'm the one feeling sick every day) and he ran a bunch of tests to see if there might be something else going on here. The first thing he found was an unexplained nodule in my lungs....that was a bit of a panic for me...and then about a week later my blood tests revealed a positive Valley Fever test. It would have been nice if those two discoveries had been found in reverse, or together, but at least the blood test explains the nodule. My doctor ordered meds to treat the Valley Fever, and he is sending me to a specialist next week for closer follow up. The goal is, of course, to keep this contained and shut it down as quickly as possible. Valley Fever is often very manageable, but it can also get completely out of control and turn into a chronic illness that causes significant damage. So here I am, "special" again. I have my own unique brand of MS, and I have Valley Fever. What next? Shall we go back to Rocky Mountain Spotted Fever and Typhus?

For any of you who knew me back in September 2011, when I first got sick....docs thought I had Valley Fever first. But then a highly sensitive titer test and my chest xray were negative, so we were back to not knowing what was making me sick. Everyone kept saying it still could be valley fever and that valley fever could last weeks and months. Then I was diagnosed with Rocky Mountain Spotted fever and Typhus, and then I got sicker, couldn't walk, landed in the hospital, found a massive lesion in my head, spinal tap showed markers for MS or Lymphoma, and the story goes on from there. Being that it's almost a year later, and its close to the end of summer, etc....this honestly feels a little too eerie, a little close to home to be diagnosed with Valley Fever now. I am a pretty rational person, but there is this tiny little, irrational part of me that is panicking, thinking the whole circus is about to be replayed. Obviously that isn't true, but it doesn't stop me from feeling that way at times! When my doctor called, I almost wanted to tell him there was no way I could have valley fever, and it must be a false positive. Oh wait. I did tell my doctor there was no way I could have valley fever, and asked if he was sure I should be taking a medication to treat something I couldn't have! He said that the blood test was definitely positive, and with the chest xray also being positive, this was out of his hands, and I needed to take the treatment and see the specialist. Shut down. Haha, at least I trust him, and the logical part of me knows he is making the right call. I am just tired of all these things I can't control. If they come back and tell me I have rocky mountain spotted fever, I'm out! I'm going to Europe, and I may or may not come back!

Haha, in other news, I recently had a new MRI done. I am still waiting on clearer results, but I will definitely post them when I get them!

Thanks to everyone for reading! I posted a picture from my trip below. I'll try to share a few more soon. I was having technical difficulties earlier, but this time I'll try to post them in the photos tab....I know, there isn't one now, but there will be!

Love and prayers to those of you going through hard things yourselves.

Mandy

New York with my sister Mariah!

Good News...finally!!

Well, good news! For the first time, my MRI came back with good news! My lesions both show a decrease in enhancement! Hoooooray!! It's the first time we've gotten a positive report since all of this started. It's only a "slight decrease" but it means the mystery of my forever-enhancing lesion is hopefully going to be resolved! And I'll take that news!

This news also makes it more clear that this is Tumefactive MS. Having MS is not good news, but when the other options are lymphoma or a brain tumor, I guess it is a relief! I am so grateful for a doctor who held steady and didn't order a risky biopsy just because it was hard to wait this out.

As for what has caused the improvement, it's hard to say. Honestly, we would have expected the enhancement to improve months ago, so it could just be resolving on its own. But I did start Avonex a month ago, and I have been on a special MS diet for about a month. So who knows. But I guess I'm going to keep doing what I'm doing since things are moving in the right direction!

As for how I'm feeling, I'm definitely better than I was in March and April. That was a really rough time for me, and it's a relief to have access to my thoughts again and to be able to dedicate more energy to physical therapy and building up my endurance. I've been making progress overall, though I still have alot of rough days, especially with my Avonex, which makes me sick for two days out of each week. I still haven't been able to jump back into social activities and haven't been able to return to work yet. It's pretty disorienting being away from my "normal" life for so long. I am looking forward to the day when I feel predictably well. I know life will never be "normal" the way it was, but my perspective has changed alot, and hopefully I have learned a few things that will help me rebuild when the time comes.

I am constantly amazed at other people I meet who have MS. I had honestly never considered this disease before, and all that people go through. And yet, when I read stories or talk to people with MS, these are some of the strongest, most positive, dynamic people on the earth. It is a daily struggle that people have to learn to live with and work around, and somehow, most people with MS find a way to be really happy and proactive about it. I can honestly say I'm not there yet. I am still overwhelmed by how tired and weak I feel every day and how hard it is to think and process things like I used to. Some of my greatest talents feel completely inaccessible right now, and it's pretty disorienting. I am not bitter about it, but I have a really long way to go to become like these amazing people who have MS and live their lives so passionately. I guess I should be grateful for the opportunity. If MS has the ability to create such amazing and strong spirits, then I am lucky to join this group of incredible people and learn all that I can from them. I only hope I can rise to the occasion and actually turn this into a force for good in my life. Lots to learn...

Thanks to everyone for your love and prayers!

xoxo
Mandy

Six Months Exactly

Exactly six months ago, I was admitted to a hospital for the first time in my life. Within a day, I had had my first MRI, had my first spinal tap, met my first neurologist, had nearly forty vials of blood drawn, and began two weeks of intensive diagnostic testing. I couldn't have imagined what would follow. And I honestly can't believe it's been six months.

For me, the hardest thing about all of this is continually waiting. Waiting for a treatment that works, waiting for a diagnosis that can be confirmed, and most of all, waiting to feel well again. Walking into my MRI last week and my doctor's appointment today, I knew that the hardest thing to bear would be no change, no news, no clues. And that is exactly what happened. We did come up with some new treatment ideas, but overall, I don't know anything more today than I did yesterday. Or last week. Or three months ago, really. I guess the great trial of my life right now is patience. I don't think I ever was very good with that one. Hopefully this will teach me a thing or two!

MRI RESULTS
My MRI was almost exactly the same. The primary lesion did appear slightly larger, but Dr. Okuda thinks that is due to positioning of my head in the MRI. So there is no new information. And my recent MS panel (spinal tap) was also inconclusive. I still test positive for oligoclonal bands, which occurs in only a handful of conditions, including MS and lymphoma, but the rest of the MS panel means nothing. It is all normal, which means it doesn't confirm anything and it doesn't rule anything out.

BIOPSY DISCUSSION
We did talk about the biopsy and Dr. Okuda reiterated how dangerous it would be. He said we may consider it again in a month, and we will definitely consider it if the lesion starts growing again. But he said even then, it will be a very difficult decision to make. He looked at me kind of sadly and said, "you are right handed, aren't you?" And then went on to explain how taking brain tissue out of the motor strip could severely weaken or paralyze muscles on my right side. He said we wouldn't touch the language center (which is good!) but that overall, where the majority of biopsies are unlikely to cause problems...this is not one of those cases. He said that we may get to the point where we need to take the chance, even despite the risks, but that it will be a really hard decision to make when the time comes.

WHAT ELSE COULD IT BE?
We asked Dr. Okuda what else this could be. He is very confident that there are really only three major suspects on the table. Tumefactive Multiple Sclerosis, Lymphoma, and a tumor of some kind. He said he still feels that Tumefactive MS is the most likely culprit, and that some of the things that make this seem like it's not MS could be directly related to the fact that it's Tumefactive MS, and not general MS. But he is very open about the fact that he may be wrong, and so we will continue to keep close to the MRIs, and if that lesion gives us any further reason to doubt, we will have to consider a biopsy to rule out lymphoma or a tumor.

THE PLAN

1. Continue monthly MRIs, watching to see if the lesion enhancement decreases (which would be good) or if the lesion grows (which would obviously be bad.)

2. Start on amantadine to hopefully help with my body/muscle weakness and extreme fatigue. This medication is often used in parkinson's patients, because it specifically targets neurological causes.

3. The Tysabri treatment is not approved by my insurance yet, so I am going to start on Avonex (a more standard MS treatment) in the meantime. That means I get to inject myself with Avonex shots (these are deep muscle shots) every week for a couple months or more. Everyone knows how I love needles! The nurses in my family are going to have to do this for me...if my life depended on it, I don't think I could give myself a shot like this!

4. We talked about the plan for treating acute relapses or new lesions in the future. I reacted so horribly to the steroids (twice!) that Dr. O says we will never use them on me again. He says that even though we didn't see any notable improvement with plasmapheresis before, that will probably be our first line of defense. Dr. Okuda says he has also considered the possibility of treating me with a chemotherapy, but said he goes back and forth about it. He said my case is a challenge because normally, MS patients and MS lesions respond very noticeably to steroids. He said that anybody else in my situation should be taking steroids every month, but with the steroids not working for me, it's almost like my lesions have gone untreated. I think this is something that Dr. O will continue to think about, but for now, the first line of defense in an acute situation will be plasmapheresis. (Hooray for shoving giant tubes in my jugular vein!)

That's all I can remember for now. I have to say I am disappointed that we don't have any further clues, and that the biopsy is too risky to look there for answers. But it definitely helps that Dr. Okuda seems to have a strong grasp of everything, and that he is confident in outlining a plan and backup plan. It really helps me to be able to focus more on recovering and getting well, knowing that he is so thoroughly watching things from a medical standpoint.

I want to sincerely thank everyone who has been praying for me, and calling on God to bless me in a variety of ways. Today was a rough day and it genuinely helped to know that there were so many people thinking about me and praying for me.

Spiritually, this has been an interesting learning process for me. This trial and the many unwanted changes in my life have been hard to bear. But surprisingly, I know more now than I ever have, that God has a plan for me. I know that even when I can't understand the reasons or the timing, that tests like this one will not last forever, and that through them, I will be taught to be a better person and a better follower of Jesus Christ. I know that he is more powerful than all of this. I know that he loves me. And even though a lack of answers feels like the worst possible answer, something about my current path feels right. Whether its actually the right path and treatment, or if its just the right timing of things moving forward, I don't know. But for now, I'll trust him and wait for whatever comes next.

love to all,
mandy
___________________________________
"I Will Praise You In This Storm" by Casting Crowns

Neurosurgeon Consult and new MRI

I met with a nurosurgeon yesterday for a biopsy consult. I also had an MRI, so it was a busy day.

Dr. Nakaki (the neurosurgeon) says this is definitely a suspicious lesion, and that a biopsy may be the only way to really know what it is. He says every time he looks at it (he's been in the loop since January), he's tempted to get a piece of it so we can know for sure. But he said we still need to keep a biopsy as a last resort because its in a very bad spot, deep in my brain, in an area that I use every day. Getting a piece of it could cause permanent damage. He is going to talk to my neurologist and see what they both think, and at what point we should decide this is suspicious enough to risk the biopsy. We may actually be to that point, since we've been waiting six months for this to improve, and its only gotten worse. Sadly, the MRI happened after our meeting, so we couldn't discuss it, but the surgeon promised to pull it up and take a look at it before consulting with my neurologist.

He did explain the biopsy process and protocol. He showed me the size of sample he would take...about 1/4 the size of what he normally takes, he said. It will come right out of my "motor strip" so they would have to work with a smaller sample. The surgeon said one of the biggest risks of any biopsy is not getting any answers. But he said in my case he actually feels pretty confident we'd get an answer. Not sure why he feels that way, but I hope he's right!

We haven't made any decisions yet. He and my neurologist are going to collaborate on next steps. I did look at my MRI films when I got home though. I'm no radiologist, but its pretty clear that not much has improved, if anything. It is still enhancing strongly with contrast (this should have resolved about five months ago), and the primary (39mm) lesion actually looks like it's grown. But that could just be the positioning of the MRI cuts. I'll have to wait and see what the official report is.

Thanks to all of you for your prayers, suggestions, and support. It really does help. I'll post an update after next week's appointment with my neurologist. Until then, I am praying hard that I will feel what the best steps are...there are too many factors involved here, and despite all my research...nothing about my case makes sense. My doctor is one of the chief neurologists at Barrow's and even he is baffled by all of this. Whatever step we take next is our best guess at the right thing. So for everyone who believes in prayer....please pray that my doctor's and I will be guided in the right direction, and that we will feel peace about it.

Love and thanks to all!

Mandy

Treatment Not Approved

The recent downturn has been rough, and I still haven't recovered. In the first week home from the hospital, we nearly returned twice. But sadly, we've run every test, and until the next MRI, we don't really have any new information to act on. My insurance has not yet approved the Tysabri, so I have not started my new MS treatment. The insurance is pushing back because it's an aggressive, expensive treatment that is usually reserved for several years into an MS diagnosis, after other treatments have stopped working well. Sadly, I'm already at the point where regular treatments aren't working, and we are anxious to protect my brain tissue.

One of my more serious symptoms has been pressure in my head (not migraines, just severe pressure). We finally found a medication that helps, but sadly, it has some nasty side effects, including persistent tingling of my hands/feet and face, stomach aches and severe nausea. The doc says I just have to deal with it because the medication is essential right now.

In other news, my job finally had to let me go. I couldn't be there, and they have given me every scrap of leave possible. I honestly was heartbroken, though of course I understand. It is a really disappointing and disorienting feeling losing a job because of an illness. I never thought it would come to this. I honestly loved working at Yodle, and I miss all my friends there. I was loving being back to work, even though it was making me sick. I was fighting for the chance to feel normal again, and I feel pretty defeated to realize that I couldn't make it work. The good news is that Yodle says they will hire me back as soon as I'm feeling healthy and strong again (sadly, I have no idea when that might be. If I couldn't pull it off after five months of fighting to recover, who knows where this is all headed). In the meantime, I get to learn about new things like disability benefits, expensive insurance, and budgeting without a budget!

Despite feeling horrible for months, and losing my job, I can honestly say, that recently I have had some of the most amazing witnesses of God's love. He has answered my prayers in very direct, personal ways. Realizing how much he loves me, and how much he knows me and all that is happening...how could I be afraid? I have absolutely no idea where this is all headed, or what my future holds, but I do trust God. I know he loves me, and I know that there is a purpose for all we go through in life, even if it's simply to learn.

Thanks to all for your continuous love and support, and especially for your your prayers. Thank you to my family and extended family for their recent fasting in my behalf. The trial has not been taken away, but the burden in my heart has been made much lighter, and I am truly grateful.

All my best,
Mandy


"When suffering, we may in fact be nearer to God than we've ever been in our entire lives. That knowledge can turn every such situation into a would-be temple.

Regarding our earthly journey, the Lord has promised, "I will go before your face. I will be on your right hand and on your left, and my Spirit shall be in your hearts, and mine angels round about you, to bear you up" (D&C 84:88). That is an everlasting declaration of God's love and care for us, including—and perhaps especially—in times of trouble."   

Jeffrey R. Holland, "Lessons from Liberty Jail," Ensign, Sep 2009, 26–33

Scary MRI Results

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.

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

"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