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
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"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