Still exhuasted...but good news, too!

So, I'm still struggling with EXTREME tiredness.  In fact, I slept in until nearly Noon today! Impressive.  I had mono in high school, and had extreme tiredness.  But this is like 100 times worse.  I know that it's just something that I'm going to have to deal with, with my brain healing and all!  And I know that the radiation is just going to probably take the tiredness to an even higher level.  It's just so frustrating.  I called the nurse practitioner yesterday to let her know that in addition to tiredness, I was achy and had a slight fever.  She asked me if I had been "active" over the past couple of days.  So I was definitely busted!!  Lesson learned - I did WAY, WAY too much last week.  

She thought that the rest of the symptoms were normal, and she's going to keep in touch with me over the next couple of days.  She really didn't want to put me back on steriods, which is good.  So, this is officially the longest I've gone without steriods since the beginning of Feb.  I have a feeling some of this tiredness and achiness is attributed to weaning off the 'roids.  But this is good - and good for the healing process.  If I can just get through it.

But the good news is that the numbness on my left side is slowly getting much better.  I attribute this to my session on Friday with Jude.  My legs are almost completely better.  Just still dealing with two of my fingers on my left side and the left side of my back.

Another interesting note:  I keep noticing a clicking noise in my sinuses.  It doesn't hurt, it's just really funky.  Kevin found an entry on a great message board (meningioma mommas) that explains what it is.  Basically, it's caused by the plates and screws and the titanium mesh adjusting to the brain cavity filling in with cerebral spinal fluid.  Cool, huh?!

Fragile Day Today

For a smile, I thought I'd post a picture of my 'nurses'.  Clyde is on the left, Simona in the middle and Chloe on the right.  One of them is always with me.  They are really confused as to why I'm home all the time now, but they are good company and definitely make me feel better!  They are the biggest sweeties in the world!

Today has been kind of a rough day.  I think it's because I have had such a busy 3 days or so, that I think things are catching up with me.  It's been 5 days since I took my last Decadron (steroid) and I can definitely feel it.  My head feels a little thicker.  The good news is that I only feel the heartbeat in my ear very infrequently.  So...that's very very good news.  I have noticed an increase in pressure in general in my head, but I'm using the wait and see approach.  It isn't anything that I can't handle right now.  I'm just so exhausted today.  I didn't get up until nearly 10 (which was actually nearly 11 with daylight savings).  I stayed up for about an hour and a half, and felt so achy and tired that I went back to bed.  Until about 30 minutes ago!  I took some pain meds and I feel much much better.   I'm just not quite back to my bad-ass self.  This is probably the reminder that my body needed to continue to take it easy.  

Neurologist Follow Up Visit

It has been a GREAT afternoon.  First, I stopped in at the office to say 'hi' to all my colleagues, just to let them know that I was alive and kicking.  It was awesome to see everyone and let them know that I am truly on the road to recovery.  They been incredible through all of this and I thank each and every one of them for their continued support!!  It was awesome to see you guys!!

Then, Kevin and I headed off to the neurologist.  This guy is a trip.  I don't think that he recognized me at first.  He was just absolutely amazed at how well I was doing - considering how big the tumor was.  He's just chatting with us for like 20 minutes, asking how I was doing on the Keppra, and then was really kind of asking me if I was comfortable staying at the dose I was on.  I'm like, "you tell me what you think!"   Things are going well, so I'm not about to rock the boat, at least for now.  So, we agreed that I'll stay on the Keppra for about 6 months, and do an EEG soon and then re-evaluate whether I need to stay on it for longer.  Sounds like an excellent plan to me.

What's even better is that I am starting to get my dignity back.  He's totally fine with me driving.  (Don't worry, I'm not going to go crazy with the driving and I promised Kevin I wouldn't drive if I'm really tired- like I am after my big day out today!)  AND I can even start to do Yoga when I feel up to it.  How exciting!!!!

Oh, and you'll love this about the neurologist...he was wearing Prada loafers! 

File this under "Overshare"

My excuse for this weird post is that I'm recovering from brain surgery.  Actually, I think it's pretty funny.

So, the scabs on my head are healing really well.  But unfortunately, I now smell like healing scab. I can't get the smell out of my nose.  It's totally barfing me out - I can't get away from it.  Kevin assures me that I don't smell, though!  So all you visitors should be safe.  I promise!

"Alternative" Treatments

Some of my postings may seem to be dogging western medicine, but that's totally not what I'm about.  I'll take whatever I can get, and I think it's important to explore all options.  Believe me, after going through major brain surgery, I LOVE western medicine.  And it's saved my life on more than one occasion!  (When I was so sick with Crohn's in 2002, I truly believe Remicade saved my life.)

At the end of last week, I was able to visit two of my alternative practitioners.  One is my acupuncturist, Mitch.  He's awesome, but unfortunately he's moving so I've got to find another one in town.  But we worked on calming points, digestion, and tension in my upper back.  Let's just say with two needles at the top of my shoulders, I could feel the tension melt away!

The other is a lady named Jude.  I'm totally going to get the explanation of what she does wrong, but I'll try anyway.  

She's an RN by training, but now works with patients using a hybrid of techniques.  One is N.A.E.T (using kinesology - testing to see how certain substances affect your muscles, indicating a weakness or allergy- and she works to help your body overcome these sensitivities - NON INVASIVELY), she also does cranial/sacral therapy, and she combines all this with mind body techniques.  Some people think this stuff is hooey, but I have seen results in the 4 years that I have been working with her.  Best of all, she works with western medicine to help your body react as best as it can to treatments.  Run away from practitioners who aren't willing to work with your western docs!

The thing with Jude is that when I had run out of options for treatment with Crohn's, she did give me some alternatives.  One includes probiotics, and two other supplements that include plant enzyme blends including amylase, lipase, and bromelain.  Jude gives options when western medicine may not have all the answers right now.

Here's what happened.  After 2 years on Remicade, I developed an immune reaction to it that caused a Lupus-like syndrome.  It took them a long time to figure this out, and I was just married, had swollen joints and couldn't move.  It was horrible.  Remicade uses mouse DNA, and there have been more reports of more problems with this drug because it uses non-human DNA (and therefore is probably cheaper to produce).  But I digress...

Then I move on to Humira, which uses human DNA instead of mouse.  I knew in the back of my mind that I only have a limited amount of time on these TNF blockers - I just knew the same thing was going to happen.  And it did.  Within 2 years.  That's when I added acupuncture to the mix several months before I started having the same reactions with Humira.  I wanted to get my body in the best shape possible to handle what was coming next....

Because during this time, I was also on an immune suppressant called 6MP (Purinethol).  The trouble with 6MP is that it can mess with your liver.  And after nearly 5 years on 6MP I had to get off of it.  It was crazy.  My GI doc was talking liver transplant and all sorts of crazy stuff.  Luckily, my liver went back to normal levels after about 4 months, but not before we had a massive scare with my biliary ducts being inflammed.  They were thinking that I had some autoimmune liver disease.  This sh*t was getting too crazy for me. 

When my GI doc suggested that I try Tysabri, a drug for Multiple Sclerosis that had been pulled from the market, and then put back on the market, I said, "TIME OUT".  I am doing well.  Tysabri has been linked to the human form of "Mad Cow" disease.  No, thank you.  Tysabri will be an option of last resort.  I want to try these other options that I have with Jude, and let's just slow down a little bit.  She agreed, but I don't think was too pleased.  A colonscopy was scheduled in April of 2008, and ALL LOOKED GREAT.  GI doc was amazed.  She still wanted me to go on a very low dose of 6 MP, and I said, let's just wait.  Had a follow up in June of 2008, and all was well.  The basic take away was, "Keep doing what your doing.  I can't argue with the results.'

My point in all this is that as a patient, you need to be aware of all options available to you.   Don't be afraid to seek out options that help put YOU in control of your destiny.   And in hindsight I am grateful to have overcome several significant health challenges before I faced probably the grand daddy of them all: the brain tumor!   It gave me a whole other perspective and a sense of calm that I just can't describe.  I just KNEW I was going to be okay.  And I can't describe it any other way than that.

A Memo to Decadron

Dear Decadron,

You are a vixen.  I love you because you have taken away the pressure and pain in my head again. But I hate you because you are sucking the life force out of me.  And you give me night schweats. And my thirst can never be quenched.  But tomorrow is the last of this taper.  And I hope that I don't have to use you again.  But I'm not counting us out - I have a feeling we'll meet again, unfortunately.

My Meningioma Vitals

More info from the final pathology report:

In addition to being Grade II WHO meningioma (jump down to the atypical - I have sheets and a mitosis as high as 7), here are some other interesting findings:

* pre- and post operative diagnosis: right convexity meningioma

* official procedure performed: craniotomy

* meningioma size: 7 x 7 x 2 cm (nice size - bigger than a baseball, not quite as big as grapefruit!)

* section of dura actually removed: 7.4 x 8.1 cm

* other findings: tumor cells are immunoreactive for progesterone receptor

Women are affected with meningiomas more than 2:1, so there is a strong suspicion that hormones play a factor.  In fact, since a teenager, I have been hormonally challenged.  Strong suspicion that I've probably had the meningioma for decades.  Then you add outside (and non-human I might add) hormones to make me 'appear' normal, which probably just added fuel to a fire (the meningioma) that was already there.  And something that was probably causing my problems in the first place!

In fact, I've done research, and you will find lots of women in their 50's who have been diagnosed with a meningioma, after they have taken hormone therapy for menopause.  

Some interesting articles on this subject:

Oprah, and the bioidentical hormone debate and menopause

The Women's Health Initiative Study: The estrogen plus progestin trial stopped in July 2002 after investigators found that the associated health risks of this combination hormone therapy outweighed benefits.

How this affects my other chronic diseases: Crohn's Disease and Ankylosing Spondilitis

Many of you have asked whether my other health issues could have been affected by this.  It's hard to say, but when your brain is being crushed, there's no telling how the body compensates for that!  The next several months will be fascinating to see how my body reacts to the tumor being gone.  And you can be sure that I will do everything I can to work with my doctors to figure all this stuff out and manage it appropriately.  This truly is exciting, and marks the beginning of the rest of my life!