Leanna's Winding Path

11 December 2010 – Da-da-da-da da-da! Steroid Power

I’ve been getting a lot of questions about how I’m “doing?”  So here goes.

I’m well, and improving.

I’m super happy.

I’m not without issues (but who is).

November was tough on me.  In the first two weeks of November, I went to the doctor or the hospital 6 times.  I felt like the poo.  I was experiencing severe nausea and dry heaving, intense vertigo, and headaches that were about as bad of pain as I’ve ever experienced. 

It turns out there were two main things going on.  1.  I had an ear infection.  2.  I started really feeling some of the side effects of my April cyberknife treatment.

Treating the ear infection was straightforward.

How about treating the side effects from cyberknife?  Well that, my friends, took steroids.  It turns out that I may have necrotic tissue in my brain.  That’s dead tissue that doesn’t get quickly carried out by the waste stream of the body.  I say that “I may have” necrotic tissue because they can’t biopsy it since it’s in my brain, and it could be tumor instead, but it’s not likely to be a tumor.  My doctor explained that it is following the pattern of typical necrotic tissue.  He expects it to get larger, then eventually shrink in size and go away.  The slight increase in pressure from the necrotic tissue expansion is causing deep pain.  There is no telling how long this process will last.  These side effects can be felt from weeks to years after treatment.

(I do not recommend looking up this necrotic tissue issue on the web.  What you will read is scary, or at least that’s what I found.  I trust my doctors.  I really questioned Dr. Gagnon very thoroughly.  He has a lot of experience.  Dr. Gangon is one of THE cyberknife experts.  He’s done studies of necrotic tissue.  I believe him when he says that he expects it to shrink and go away eventually).

Well, the headaches were so bad that I was in near danger of not being able to fly to Portland to see my dear friends for Thanksgiving.  My doctor said the flight wouldn’t kill me, but due to the pressure changes, I would wish I was dead.

But I just couldn’t miss our trip.  So we found a solution.

Steroids.

I know what you’re thinking.  Weren’t steroids what caused so many problems last year?  You’re right.  I went sort of mega-crazy on a high dose of steroids.  Yeah, I was nervous about returning to this drug.

But I had to go to Portland.  Not only that, my head hurt so bad, I could barely stand.  I had to have a solution for my head pain, or it wouldn’t have been just Portland I was missing out on.  It would have been everything that requires me to move.

But it’s a different situation this time, and I think its much more under control.

Last year, I was on 16mg/day.  Currently, I’m taking 1.5mg/day. 

It’s not a perfect solution, but it’s working.  Of course it has its own side effects though….as you might see, I’m posting this blog around the 2am hour.  But the headache is mostly gone.

So yes, I am having trouble sleeping now, but luckily that usually doesn’t stress me out too much.  I am not having racing thoughts or doing any radical projects in my sleepless hours – which was the indicator of the start of crazy last year. 

My doctor (Hendricks) thinks that I may become steroid dependent, as she says that it takes a long time for necrotic tissue to go away.  Hopefully not.  My other doctor (Maskowitz – he’s my awesome, down-to-earth brain surgeon) says “let’s prove her wrong.”  He thinks I can beat this in my own time.

Now, let’s move on to the super happy business I mentioned.

Herb and I just moved to downtown Frederick, MD. 

I loved our apartment in Silver Spring.  It was so sweet and cozy.  It had a very safe neighborhood, was right by the Co-op, and right by Rock Creek Park.  It was also the place where I experienced my illness.  I felt supported and comforted in our tiny little apartment.  It was a wonderful, peaceful, healing space for me.  It was sort of like swaddling. 

But it was that tinyness and remote neighborhood that was driving Herb crazy.  We felt no real connection to a fun community; we didn’t really have access to many outdoor opportunities; and it was nearly impossible to work on bikes or really anything else in our small, small space.

Well, we had been discussing moving to Frederick for over a year.

We finally did it. 

We found a house in Downtown Frederick.  A big house.  A house so big (for us anyway), that the size of it intimidated me at first.

I was nervous about the idea, right up until the day we moved.  As soon as I unpacked the very first load from our car to inside this house (exactly 7 days ago at 12:15 pm), I started to feel right at home.  I love, love, love our new space.  While Herb has adopted a big commute (45 minutes if he leaves at 5 am, up to 2 hours if he leaves during rush hour), it’s worth it.  Luckily, I work from home most of the time, so I should only have to do the commute once or twice a week.  We’re both happy with this situation.

This community is so cool.  Our place is awesome.  And I feel like I’m leaving my illness behind in Silver Spring.  That’s where I was sick.  This is where I intend to LIVE!