Ticking Time Bomb & The New, Old Lesion

I had another MRI on Monday.  I'm getting better at getting MRI's.  I held almost completely still the entire time!  And the injection of contrast was less painful than usual.  I was scheduled to have an appointment with Dr. Foley who comes highly recommended as an MS specialist the next day.  I have been waiting for this appointment for two months.  I was actually counting down the days until my appointment with him right before his office called and said they had made a mistake scheduling my appointment and that he wouldn't actually be in the office that day.  So they needed to reschedule me for three weeks later!  The reason I was so anxious was because I feel like my disease is so ambiguous.  I've been feeling like I've been wandering aimlessly for a little while with no clear direction.  Because if I really do have MS, it's certainly not a classic case.  I need someone with a lot of experience to tell me that they've seen this before and that they are confident they know what it is and definitively rule out other possibilities. Maybe that's an unrealistic expectation, but it sure would be nice.  I'm also willing to just go on not knowing, because I've felt through this whole ordeal that not knowing=not having anything serious.  I would much prefer to not have answers because there's not enough evidence to support any specific disease.  But, of course, if there is evidence to support a disease, it's best to know about it.  I really need some guidance from a doctor, but they are so unbelievably hard to get into!

So I had my MRI, but no way to actually find out the results.  I had my appointment with Dr. Foley scheduled now for April 9th and a follow-up with the first neurologist I saw who is good, but not a MS specialist, scheduled for April 17th.  That's too long to wait to know the results of my scan.  My dad is a doctor who was working for Intermountain until he came down with a debilitating auto-immune disease called sarcoidosis.  He hasn't been able to work for several years but still makes himself very useful as our personal family 24/7 doctor.  I guess you could say he's a little like Baymax, but he doesn't fly.  Next time someone asks me who my personal care physician is, I can't wait to reply, "Baymax," with a completely straight face.  That would be so awesome.  Anyway, the whole point in telling you all of this is to explain why my dad has access to the Intermountain online system and was able to obtain my MRI results.  I have filled out all of the paper work to give him permission to access my records and obtain all of my medical information.  He's compiling a binder for me of all of my medical reports in chronological order.  If you knew his personality, this would make you laugh.  He's so formal that way.  His doctorness totally spills into all aspects of his life.  I remember when I was a teenager and he took a phone message for me when I wasn't home.  It literally said, on a post-it note, "Unidentified female called for Lauren at 14:00 hours"  He always uses military time, haha, he's so funny!  He does so much research for me, he'll be able to have his own neurology practice in a few years!

Realizing it would be ages until I would get the results of my MRI, I called my dad and asked him to look it up for me.  I was not expecting the news I got. He told me that there was a NEW lesion!  I mentioned previously that I had another speech slurring episode, so I had considered the possibility of a new lesion, but I thought it was more likely related to the fact that I had gone off of my steroid medication that had shrunk the lesion considerably.  I was expecting to have my lesion appear larger, but not to have any new ones!  I had already decided that, if I did have a new lesion, it would be really bad news.  We had been told that MS attacks typically occur every eighteen months to two years.  If I was having more attacks in the period of two months, I thought I would be crippled by the time I turn 40!  This shook me up a lot and made me feel like I was thrust back into "scary future" mode.

It's hard to describe being diagnosed with MS when you have no symptoms.  It feels kind of like someone telling you that you have a ticking time bomb in your body and they have no idea when it will explode or how big the explosion will be or how long it will take you to recover from the effects of the explosion, but they just know it will explode.  Ummmmm......okay, but I feel so normal right now!  How could there be a ticking time bomb inside my body?  Can't we get it out?  Nothing's even happened yet, is there really nothing we can do to stop it from exploding?!

The first lesion was originally 2 centimeters.  The good news is that it has gotten a lot smaller.  This is just another sign that it cannot be a cancerous tumor.  Cancer grows, it doesn't shrink on it's own.  The "new" lesion is 4 millimeters.  I didn't realize how much smaller that would look until I saw the MRI images.  It is tiny compared to the first lesion!  And it is located in the right frontal lobe.  I called Dr. Butrum's office yesterday to tell them I wanted to be seen right away to talk about the results and Dr. Butrum said he would see me at 8:40 this morning before their office even opens!  I thought that was very considerate of him.  He says that some people could have the right frontal lobe removed and not even notice it was gone.  So that's good!  Apparently, it's not the most crucial part of the brain.  He said some people see personality changes with damage to the right frontal lobe like loss of inhibition.  So, if I start dancing on the tables, it's the lesion dancing, not me!  The location is a really big deal because I understand that the severity of MS is not just how many lesions you have but the location of the lesions.  So far, I have none on my spine.  I want to keep it that way!  That's when you start to have symptoms like not being able to walk.  I thoroughly enjoy being able to walk and would like to maintain my ability to do so as long as possible.

I was originally wanting to delay treatment as long as possible because I'm so not interested in taking pharmaceutical drugs that always have awful side effects, but I had a conversation with my sister-in-law Jordan.  She had talked to her dad, who has MS.  He explained that you never know when you're going to get another attack or how severely it could disable you and that the medications they have can delay attacks and really cut down on the amount of permanent disability.  Because of this conversation, I decided to get into a doctor right away and start treatment.

The appearance of a new lesion makes the case stronger for MS, but Dr. Butrum says the new lesion is not a classic MS lesion.  He said you typically see them deeper in the brain and larger.  I also want to address the matter of this being called a "new" lesion.  Dr. Butrum showed me the latest MRI and my first MRI, taken in December, side by side and I am not kidding, there was a really faint dot in the exact same size, shape, and location on the first MRI that they are saying is a new lesion.  I pointed it out to my doctor and he said it could be the first sign of the lesion, but the radiologist determined that it was a new lesion.  Now, I know that I'm not trained in radiology, but it's going to be hard to convince me that what I saw on the MRI is not just a fainter version of what they are telling me is a new lesion.  I don't think it's new at all!  Not that it makes that much of a difference.  The significance of the other lesion is that it demonstrates "multiple scars" or multiple sclerosis.  Whether it's new or not doesn't make a big difference.  I was just worried that I was rapidly getting new lesions by the month.  I talked to the doctor about the relation between lesions and attacks and he said that just because you have a new lesion doesn't mean that you've had an attack, but when you have an attack you typically have a new lesion to go along with it.  I also asked him if this meant that I have an aggressive form of MS.  That is what shook me up about finding out about the new lesion. I thought, "Oh great, I have a really aggressive form of MS that is going to cause rapid decline in health."  But the doctor didn't agree.  He said that in aggressive MS, patients show up their first time with 10 lesions on their brain.  He said, this isn't aggressive.  That is such a relief!  It's just a little bomb. :)

He doesn't think that my worsening in speech slurring is related to the new lesion.  He says I should expect it to take 6 months to a year to see improvement in my speech and I might have fluctuations in severity along the way.  We can't really determine the age of the first lesion, either.  The only sign we have of its age is that MS lesions usually enhance with contrast for about three months and then no longer enhance.  So, the fact that my lesion was enhancing means that it was most likely formed within three months of when I had the first MRI in December.

I've decided to start treatment.  It doesn't sound like patients have a lot of side effects from the available medications.  I'm going to start one called Tecfidera that will be a pill I take twice a day.  I'm so glad it's not an injection!  Some of them are!  I still plan to get Dr. Foley's opinion, but I wanted to get the ball rolling since it can take a couple of weeks to get the medication approved and sent in the mail.  It's not something you can pick up at Walmart, apparently.

Thank you everyone for your continued prayers and concern.  Aside from a brief scare yesterday, we are doing really well and life has been really normal.  We have notified Dr. Reichman about how long we have been waiting to hear from Stanford and he is looking into the delay for us.  With all of the other evidence, I think the worst thing they could say is that it looks like MS and the best thing they could say is that it was just a smudge on the film and there was never anything there afterall, but I'm not going to count on that!

Control Freak

Holy cow, I am so sorry, everyone!  I was posting and posting all of my drama and then I just dropped off the face of the blog earth!  Well, the reason why is because there is absolutely nothing going on right now.  No doctor's appointments, no results, no news, but I knew that I needed to post because I know some of you are feeling like there's stuff going on and I'm just not letting you know.  Trust me, if I have news I will share it with you.  There's just not much to share right now.  We still have not heard anything from Stanford and still have no idea when we should be expecting to hear.  We're not terribly concerned about that anyway.  I guess it could be huge, but I'm expecting it to be the same news we heard from Huntsman.  The next big thing is getting to see Dr. Foley in Salt Lake.  Several doctors have told me that he is one of the "premier MS doctors in Utah."  He is a neurologist that specializes in just MS.  So he is really knowledgeable and experienced.  I am basically planning to put all my trust in what he says.  My appointment is on the 18th of this month.  I'm still not totally 100% sure that I have MS.  But I figure that this guy sees it so much that he will be able to recognize it for what it is.  I figure that either he'll say, "No way you have MS, this looks nothing like MS."  or he'll say, "Yes, I've seen cases like this before with very few symptoms that develop more later on."  So I feel like he will be able to give me an idea of the path I should be on.  Right now I'm on the "I have MS path" but sometimes as I'm researching, reading, making my supplement plan, etc, I wonder "Wait a minute, do I even have this?"  If this doctor thinks I do, I will believe it for sure, at least I think I will.

 I guess I've developed a little bit of an "invincible complex."  I'm totally convinced that I will overcome everything and always be the one to beat the odds.  Even before I Houdini'd my way out of a death sentence, I already knew I was not going to be "the average person that lives x number of years" I knew that I would be the exception to the rule.  It's not because I thought I was better or more deserving than anyone else, I just knew that the average person isn't willing to work as hard as I am and the average person doesn't have the gift of the Holy Ghost to guide them, and the average person doesn't have as much vision of what they want their future to look like.  I have a clear picture in my head of what I am going to accomplish in my life and, other than God, no one and no challenge is going to stop me from achieving my goals.  If God says it's the end, it's the end.  But, if He doesn't, then I know how to make a plan and follow it and fight for change!  I've never been one to just sit around and be unhappy with my situation.  Someday, after I die, people will probably go through all of my stuff and find all of my journals and notebooks.  When they do, more than anything else, they will find plans.  Plans I made of how to change my circumstances.  When I write in my journal it is usually because I'm making a plan.  My plans range from how I'm going to keep my house clean to how I'm going to become flexible enough to do the splits to how I'm going to stop losing my temper with my kids.  One of the best skills I've ever learned is how to ask myself questions.  When I have a problem, let's say it's being too stressed out, I ask myself the question, "How can I feel less stressed out?" "What can I do to feel less stressed out?"  And then I write down every idea I can think of.  It's amazing how this works!  Once you ask yourself a question, your subconscious mind tries to find an answer even when you aren't thinking about it.  Just like when you can't think of someone's name and then, later on, it suddenly pops into your head out of nowhere.  That's because all the time, your subconscious was searching for an answer.  That's why I ask questions.  There's always an answer, even for things that seem out of our control.  There's almost always SOMETHING I can do to make the situation better.  I guess I'm a control freak.  I like to be able to do something about my problems.  That's why I hate situations that aren't my fault.  I hate it when I hear people say things like, "Your depression is not your fault, your weight problem is not your fault."  Don't tell me that!  That means I can't do anything about it!  And sometimes, that is the case.  But most of the time I CAN do something about it and so I do.  This attitude is one of the reasons why I believe in my chances at overcoming challenges.  I think Heavenly Father is probably mostly pleased with this attitude of self-improvement but also probably wants to show me that He is in control and I'm not, even though I obviously want to be. I am frustrated by things I can't change, but, when it comes down to it, I know that it's much better for Him to be in control. He has way more wisdom and perspective than I do!

Life is almost completely back to normal.  The only thing that has changed is all of the time I spend researching, which is probably why I haven't found time to blog.  And, of course, my hair is not at all back to normal!  I realize that I should be so grateful that I didn't have it all shaved off and that I'm not losing it to chemo and that I'm not dying and I AM grateful, but, if I'm totally honest, I have to admit that it still bugs me.  I totally hate having to wear hats and headbands all the time, but when I don't, I feel like people are going to think that I have the strangest punk haircut ever!  If everyone that saw me knew that I had surgery, it wouldn't bother me at all, but they don't.  Maybe I should make a t-shirt.  I know I shouldn't care about what people think, but honestly, we all do a little bit, right?  We want to portray ourselves a certain way and have people get who we are and what we represent.  Going without a head covering is so unattractive, but wearing one is so uncomfortable.  Do you see my dilemma?  I would be freaking out so much right now if I had NO hair.  That is one thing I do not deal with well at all.  (It's one of those things out of my control that I hate).  My kids just want me to go without hats.  I have started going to my workouts without anything and I've been to the mall once and the grocery store once without anything on my head.  I guess I'm just easing my way into it.  The biggest problem is going to the temple!  That seems so ridiculous because it seems like that's the best place to go to feel loved and accepted, but I cannot bear feeling like people might think I purposely cut my hair like this! And I can't wear a hat!  I like my wig, but I can't stand how uncomfortable it is.  Right now, I'm working on a hair piece that is a clip in bang/top wig.  It just covers the very top of my head.  If I can get it the right color and cut it the right way, it could work really well, but I just cannot wait until I have long hair again!

Wow, I just love how I can switch gears so easily between the deep and the petty!  That takes talent! :)  The only other thing that I haven't mentioned is that I had another speech slurring episode.  It was the Thursday before Valentine's day.  Joe and I went out to celebrate that night to avoid the crowds.  I was stumbling over my words again and Joe said it was really noticeable.  It had been getting so much better so I didn't understand why it was getting worse again.  Since then it has started to improve again.  So now I'm left wondering, was that another MS attack?  or did it have something to do with the steroid I had been taking since surgery.  The steroid made the brain lesion shrink a lot.  When I stopped taking it, did the lesion get bigger again causing pressure on the speech portion of my brain?  I don't know, just don't judge if I stutter or stumble when I'm talking to you. :)

Well, that's all, my lovelies!  I will write again when I've seen Dr. Foley or I've heard from Stanford, unless I think of something profound or petty to say before then.  Mwah!