Open Letter to Decadron Part II

Dear Decadron,

I knew I'd see you again, you hulking steroid, you. After being in tears twice last week at restaurants because the noise was overwhelming, I knew I was in trouble. Then, after being in tears trying to arrange an unexpected MRI (and drivers down to Bloomington) on Thursday, I really knew I was in trouble. It was just too much for me to handle. And those who know me know that definitely NOT how I am.

Then the headaches really kicked in hard. And I broke down and called MPRI. Now that I started taking you yesterday, here I am with headaches that are gone. But replacing them will be bone crushing aches from my back to the bottom of my heal. And night schweats. And then the dreaded decadron withdrawal when this is all said and done.

I was wondering how I was going to make it through the next 8 treatments (I'm thisclose to being done!) without you, but I was going to try. So instead of wanting to take my time closing the deal with the proton beam to help manage my swelling, I'm now anxious, anxious to be done with you and the radiation.

Atypical meningioma - from 6-8 weeks out of work to going on 5 months!

My Brain is Fried

Well, not literally of course. But I am on a 'break' for 4 days because of bad brain behavior.

Yesterday, I had a chat with Dr. Thornton at MPRI. I had been noticing some irritating symptoms last week. Numbness in my left leg from the top of the thigh all the way down my foot, in my left arm, and general crankiness (what, me?!) and a feeling of just not feeling right, like I'm getting the flu.

On Monday night, I had another one of those terrifying episodes where I thought I was going to suffocate in my sleep. Needless to say, I was not pleased and had a feeling I knew where this was headed. I also told him that I even had some numbing episodes on the left side of my back.

He then proceeded to totally geek out (he was so excited, bless his heart!) about the cortical homunculus. I add the Wikipedia link here because it is really cool. And now I'm totally geeked about it. It's basically a graphical depiction of the body within the brain. All my symptoms correspond pretty close to this picture, considering my tumor is on the top half of the brain. Check out the link - it's pretty cool! It also explains why I still haven't gotten sensation back on my left index finger.

ANYWAY, bottom line is that I'm experiencing some swelling in the brain. It's totally expected at this point in time during treatment. So, we've decided that I'm taking the next 4 DAYS off! Normally, I would be pretty bummed, but I know that I need this time off. I just never recovered after last weekend, and considering I slept 12 hours last night, having some time off sounds like pure bliss.

When I go back on Monday, Dr. T, along with Dr. Henderson, will have figured out the new fields. YES, this means that not only will I have had a break, my treatment area will be narrowed down for the last part of treatments. This should also make my brain happy. We're still gonna try to get 38 total treatments in, but it might take a little longer than expected. Which at this stage is just a-ok with me.

The countdown... Monday July 6!

Kevin here...

Folks the final countdown is on! Jenny finished up here 27th treatment today at MPRI. Her Doctors finalized her final treatment count and she only has 11 more treatments (38 treatments, total dosing of 68 CGE's). Her last treatment will be Monday July 6. MPRI is taking their holiday on July 3rd, so she will make up that treatment on Sunday July 5th with one last treatment on Monday the 6th. I can't say enough about the professionalism and compassion the folks at MPRI provide. They are truly a wonderful gift here in the State of Indiana and the Midwest. We are truly fortunate to have access to this type of treatment protocol. I have not been able to go down during the week for her treatments but Jenny always comments on the therapy team and the fabulous job they do day in and day out.

It's hard to believe that this entire ordeal started over five months ago but the end is in sight! I can honestly say this is the best I have seen Jenny feel in over a year. The changes were very subtle but her friend definitely made a big impact on her well being. I am just glad to see the spring returning to her step bit by bit every day!

Take care Friends...

Kevin

One More View

Here's a closer view. It looks greasy because I am putting vitamin E oil to help with the tenderness and pain. At this point in time, nothing really helps all that much. You can see closer towards the front one of the spots where I will probably permanently lose some hair. It's a small patch right now, but it's getting really burned. (Or at least it feels that way.)

You can also see the scar where they cut the skull for the burr hole to drain the hematoma. It's about an inch or so above the ear. I can actually FEEL the round hole where they drained it. It's awesome!

If you look closely at the very, very top of my scalp, you can see part of the scar from the original surgery that curves along the entire head.

No Comb-Over Could Fix This

It's the end of year 32 for Jenny. I'm turning 33 tomorrow! No better way to celebrate than by posting the latest and greatest picture for your viewing pleasure. It's a pretty sweet 'do, isn't it!?

Note the redness and the precise line of where the hair loss starts and ends. The loss curves around my ear, but I still have some hair left at the bottom. That means I can wear a beret and you can't really tell that I have lost any hair at all.

Of course, hats aren't as comfy as the silk scarves that I have. I like to wear the scarves sometimes because then people smile at me more...they feel bad for me, I guess! Kevin thinks I'm weird, but is it really so wrong to like it when people are smiling at you all the time (and holding doors open for you and stuff)?! Hey, I might as well enjoy the 'perks' of losing my hair while I can!

Hair loss and Soy

Here's the sweetness that is my hair!  Yep, I've lost enough that I'm walking around with a scarf on all the time in public.  

Onto a different topic:

So, in addition to NO EXOGENOUS HORMONES for ever and ever (including anything for menopause, etc.), it has been recommended that I AVOID SOY.  I have been doing this as best I can for some time now, as I've read that soy can have hormonal effects on the body.  I THINK it has something to do with being antiestrogenic.  When you have progesterone receptors, soy could actually feed the kind of tumor I had.  At least I think that's the logic... anyway, I just know that soy can screw with your hormones.  

I have been leery of soy for some time, and having confirmation of this from a medical professional is all that I need to stay away from soy as best I can!  There's still lots of debate in the medical world, but if the Medical Director at MPRI tells me to stay away from soy, you can bet there's a reason for it.

The problem is that soy is, unfortunately, in about everything.  Try finding a multi vitamin without soy.  Try finding a protein bar without soy.  TRY FINDING CHICKEN OR BEEF WITHOUT SOY AS A COMPONENT OF ANIMAL FEED (along with corn).  That also means cow dairy like milk, cheese, etc. -  that also has soy in it based on the feed of the cow.  And 'organic' or no hormones added doesn't cut it.  I found that out the hard way at Trader Joe's today- the T.J. branded-chicken isn't fed antibiotics, but it states clearly on the package that the chicken is fed a diet of corn and soy.  So disappointing.

(I know it's impossible to avoid soy all the time, so if you see me eating a chicken burrito from Qdoba, don't hassle me.  My body type demands that I eat meat!  And trust me, I'll be beating myself up the whole time I'm eating it.  If I can at least manage my soy intake when I cook meals at home, that will be better than nothing.)

And people wonder why girls are getting their periods at 9 years of age?!  Seriously, this is a real concern.  It's going to take a lot of effort to try and find meats that are from grass fed animals.  Hell, I'll even take some that have corn as a main component of their diet.  But while some people have corn allergies, the insidious thing about soy is the (increasingly known) effects on hormones.  And you know who it's hurting the most?  Women and girls!  

The Honeymoon is Over

It's happening.  The dreaded hair loss.  My only conciliation is that I have been assured that most of the hair will grow back, except for a small patch where all three of the beams converge. Right now, though, the hair loss basically covers half of my head.  Seriously.  It is tender, sore and very itchy.

But, I can deal with that, as long as at least some of it comes back!