A Huge Milestone

Last week, I got up off the floor. All by myself, I got up off the floor. That is something I had not been able to do for oh, let's say three years. I did a really dumb thing in my bedroom and as a result took a tumble. To make matters worse, I did not have my brace on - which, as you can imagine, contributed to the initial gymnastic part of this story. I've been practicing getting up in PT, but have not been successful because my new brace doesn't allow me any purchase with my right foot at the toes. I only have the tip of my right toe down to push on that side. An almost 300 lb ballerina I ain't. So I took a different approach, and without sweating the details, I put the brace foot up first and the trumpets sounded. Confetti flew and streamers descended. Thousands of doves were released into the skies. Okay, a sparrow flew by.

But, my Physical Therapist cried and Bobby took me out for a celebratory pizza.
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18 months and I'm still slugging away at Physical Therapy.

I wonder if that's some kind of record? Without my physical therapist, I'd still be on the floor. Heck, I'd still be unable to walk into a restaurant, or escort my Aunt up to her apartment on foot, or simply have the balance to carry a knitting bag or a purse and still be able to open a door. She has worked with me through new skills and fast progress to building strength and endurance as we tackle even bigger goals. I believe a lot of people reach a plateau, run out of insurance or money, or just plain give up. My therapist says as long as she sees progress, she will treat me.



And they say the medical profession has gotten jaded and lost it's heart.

Gee, where does the time go?

Life is good.

The week before Christmas 2007 was my last radiation treatment. The week before Christmas 2008, my blood counts were finally normal and I took my last antibiotic, which ended all chemical treatment. I also had a terrific follow up MRI of my brain but I will continue to see my Oncologist for follow up and MRIs every 2 months. I'm getting back to normal, whatever that is. I just have to remember what to do with myself.

In Physical Therapy I've worked hard for over fifteen months and have almost reached my maximum potential. Then I have to find a gym for maintenance. (eeek!) In a way, I am in better shape than I have been for a very, very long time. Balance. Strength. Stamina. Cardiovascular status. I'm stiff and creaky in the mornings or when I've been sitting, but when I get warmed up . . .

I CAN

• Do sit ups, press ups, and stand ups(without holding on to something)
  
• Stand without a cane near a corner and kick a ball with my therapist, changing feet and aiming like a soccer star
• Catch and throw! Fast! While maintaining eye contact with my therapist!
  
• Pull 8 lbs of weights in three different directions
• Walk an average of 14 minutes on the treadmill
  
• Walk backwards
• Stand on my feet or shop in a store up to an hour without collapsing
  
• Load my scooter in and out of my car by myself, even on a windy day in the cold (a HUGE goal)
  

Everybody wishes folks a "happy and healthy New Year". Yeah yeah yeah.

I hope you tackle something you've been wanting to, but never thought you could.

No matter how small it seems.

Day 18 - Poppies will make them sleep . . .

Poppies... Poppies. Poppies will put them to sleep. Sleep. Now they'll sleep!

The Wicked Witch of the West

When they said I would get tired with the radiation - they weren't kidding. I finally "hit the wall" a few days ago and now need that nap I've been avoiding. My eyes just won't stay open and my head falls down to my chest. A couple hours though and I've right as rain thus far.

I have a brain cancer buddy after me now at radiation. He takes the same treatment drugs, has seizures, arm paralysis - the whole bit. Kinda cool. I didn't feel the need for a support group since the whole brain tumor thing wasn't new to me. Maybe I will later, who knows. I knit with a group on Wednesdays at The Claudia Mayer Resource Center (where I ordered the bangs) and know I can avail myself of their services if I want to. The girls already fill some of that camaraderie I guess. There are other friends and a family member who deal with cancer that I draw from too.

I'm good for now.

The sinuses are on the mend. Just stuffed up big time. I didn't take my nasty germs over to the cancer center on Wednesday so I didn't get to pick up my bangs yet. I really am aware of those immune-suppression issues. Tuesday I wore a mask while in the waiting room to see my Medical Oncology RN. I was coughing because of the draining crap and it makes everyone worried naturally. Someday that could be me.

Now then, lemme explain something.

Radiation to my brain causes swelling(or fluid) to collect in my skull. This puts extra pressure on my healthy brain (no joking please - I do have some). That pressure(intracranial pressure) affects how I walk/balance, use my right arm, and think/speak. Here's how it goes:

• More weakness on the right side - the steroid dose goes up - three days to adjust - my body improves
• The steroid gives me side effects - they back it down - three days to adjust - I get weakness on the right side

It's a real Catch 22. It is also something I am just going to have to get used to for probably a good long time I think. Nobody has any answers for me when I've asked things like "how long will I be on steroids" or "will I get the function back eventually" or "when the tumor dies, does it make room for the healthy brain to expand again". They just don't know. I remember from my days in the OR. There was a line in the OR permit that read, "Medicine is not an exact science . . . How true. In other words

They don't know.

Ooooo! Ooooo! Today's funny thing. This morning I had an "I can moment" and announced to Bobby that I can wiggle all my toes. He says to me, "Can you braid hair?"

Get it?

Day 14 - drip . . . drip . . . drip

If you gross out easily ~ avert your eyes.

The lovely warm Autumn winds blew a lot of leaf mold into my already dripping sinuses it seems. Or something. A constant slide of goo is in the back of my throat. It smells and tastes foul, and keeping food, drink or gum in my mouth is the only way to help it. A run of the mill sinus infection has flared up and I'm on Azithromycin, a wonderdrug that has worked for my sinus ick before. My immune system is still in good shape so there should be no problems there. I worried about lying flat for my treatment today, but I asked the techs to give me a minute to clear things out first (Ewwwwww!) and that worked just fine.

At least the rest of me is still feeling great, a bit tired now and then. Last Monday they decreased my steroid, Decadron. By Thursday I began seeing the return of right sided weakness and upped my dose again as they said I could. The change in the medication sat my energy level on it's heels for Thanksgiving at my sister's though. I didn't need the tryptophan to feel like a nap. Still. There was a lot to be thankful for this year, eh? Amen.

Now that the Decadron has kicked back in ~ I'm back again. The see-saw thing is weird, but I noticed some new things.

I CAN

• Wear my bifocals, for some reason the progressive lenses make sense in my brain now
• Click my fingers rapidly back and forth in even rhythm, couldn't get a good right click at all before
  
• Take the lid off a cup of coffee without the fear of the dreaded "McDonalds burn"
• Reach behind me into the center console of the car without scraping the heck out of my arm groping for things and actually come out with the thing I went in for ~ first try
  
• Easily reach for and buckle my seat-belt on the passenger side (although I still let Bobby, it's kind of a thing with us)
• Put the recliner up and down without trapping my arm in the couch or the end table
  

Cool.


Hair continues to run away like a bat out of hell. I get a mug full every time I take a shower and am seriously looking like a monk with lots of thinning on the rest. Shaving my scalp is not recommended, but I'll probably get a buzz cut soon, this long stuff all over creation is veeeeery messy. I got a call today that the set of cute bangs that I ordered came in already. I'll be able to tuck them right up into the front of a hat and be at the height of high fashion hair design. They even make a ring 'o hair like a hula skirt to wear with Velcro and a hat. Supposedly it's not as hot for the summer and can be attached directly to multiple hats. Cute! My health insurance will cover a wig. I'll have to find out the details but hey, it could be fun.

We can all use a little fun.

Day 12 - Salty Tears of Joy

So much has happened.

Since Monday my sensation on the right side has dramatically returned again.

It's interesting to go to Physical and Occupational Therapy and try to explain to these professionals just how it is that my body can do things it couldn't do the day before - without a gradual build up of strength of that particular muscle set. Suddenly I can hold a door open with my right arm and walk through at the same time. I don't hesitate when I reach towards my face for fear of poking myself in the eye or nose. I can reach behind me and slip my arm in my coat sleeve easy as pie because the subtleties of the lining and seams make sense to my arms. I'm putting my right heel down when I walk.

Perhaps I should explain.

Proprioception is returning to my body along with sensation. It's something most human beings aren't even aware they experience. Your body holds just enough tension in a muscle to keep a body part in position - without thinking about it. Today I sat in a restaurant with my husband and rested both elbows comfortably on the table, cradling my chin. Wednesday at breakfast I couldn't do that. My right arm would slide sideways and I would have to tense the shoulder and forearm to keep that from happening. Quickly it was uncomfortable and I gave up. I always thought it was because the muscles were weak.

Nope.

Muscle recovery doesn't happen that fast. If anything, I've been really lax at my upper body exercise the last few days. Yet the improvements continue. Sometimes I realize I've done something amazing like push up my glasses without looking at the finger first so I don't stick it in my nose - and just cry. Sob even.

Oh yeah. My mentation is waking up too.

I had a regular PCP appointment and my nurse (hi Jess!) says to me "You don't hesitate and think about what you're going to say anymore. You're more articulate. Even the sound of your voice is different". To have her notice that meant more to me than my new ability to get up on the exam table without two nubian slaves and a crane. And there are other things. It's like I've had a head cold for a few years and can finally breathe. The tumor pressing on the rest of my brain was wearing me down veeeeeery slowly - but I was less of me.

I'm baaaaaa - aaaack.

Wednesday was my Birthday

It went something like this:

1. Up at 5:30 - I'm thrilled to be 50. At 34, I actually didn't think I'd be here.
   
2. Treatment at Hopkins
3. Appointment with Radiation Oncologist - all systems go
4. Labwork
5. Lunch with Bobby at Eggspectation
6. Physical and Occupational Therapy
7. Pick up my car with installed remote starter ( BD present from my Boo - for those cold winter mornings)
8. Trying to speed-knit the rest of my Dad's hat in between all of this
9. Dinner and birthday doings with the family here at our house
10. Really big wish while blowing out the candles

25 Steps

That's how many there are up to the observation platform in the UTZ Potato Chip Factory in Hanover, Pa. Wanna know how I know that? I climbed 'em today. Me. Gimpy. Scooter girl. It was the only way to see the self-guided tour without calling a day ahead. With a hand from Bobby up I went. Half of the steps were with my right foot.

I went to the bathroom and wept.

Bobby was worried and stuck his head in but I reassured him I was sobbing because I climbed the freaking steps and wasn't even out of breath. We toured the entire length of the factory on foot, stopping at each "push this button" to hear the delectable story of my favorite chip. I was jerked into reality on the long walk back down the hall though, and had to sit a spell with my numb legs up on a chair, munching the freshest free bag o'chips in the land. Ahhhh! UTZ.

Going down was not pretty. Two Tylenol for the arthritic knees please, I forgot that part of why I don't do stairs.

It was Bobby's idea to stop there on our impromptu autumn drive to where my Great Aunt Ola and Uncle Charlie lived. I can always count on it being beautiful this time of year and the nostalgia is a sweet bonus. The current owners have put on a two story addition and a wooden "compound" fence since the house sits directly on the highway - the front yard taken by public domain long ago. It's a busy intersection and it appears the family has children, or possibly a home daycare. Aunt Ola and Uncle Charlie could never have the children they longed for and doted on my mother, their goddaughter. They would have been pleased to have the place full of kids. If you'd like to see the house, go to Google Maps and search "Bonneauville Pa Ola". Click on "Satellite" in the upper right hand corner. I've written a bit of history there for the world.

On to Gettysburg for dinner at McClellan's Tavern in the historic Gettysburg Hotel. We enjoyed a quiet, well prepared, early dinner. I discovered I can rest my right elbow alone on the table and cradle my chin as I gaze at my Boo.



brain tumor, paralysis, seizures . . . life is good.

I can

Here are a few things I can do today that I couldn't do the day of my surgery one week ago.

I can

1. hook my own bra
2. feel the water in the shower on my right side
3. cut my own steak and use a fork in my right hand
4. sit up straight without thinking about it
5. carry a glass of water across a room without sloshing it all over the place
6. stand up the first time I try from a cushy couch
7. walk to my mailbox
   
8. stand up from a chair that isn't up against a wall or braced by someone's foot - and holding on to someone's hand
9. brushing my teeth without bobbing my head up and down on the brush
10. use a regular restroom if I need to
11. open my front door with the key without jiggling to get it in straight
12. eat popcorn with my right hand at the movies and hitting the opening of the bag without fumbling in the dark
13. smile without feeling it's crooked somehow and wondering if anyone notices

And that's just the highlights.

Things have been happening to my body so fast I can barely breathe sometimes. I don't remember what it was like to be able to take care of myself. I have to remember that I'm supposed to take it easy for 4-6 weeks and not bend over and not lift things and not do the laundry and scrub out the tub and weed the garden and mow the lawn and go to The Home Depot to get the sand so I can build a patio out of some granite we have and . . .

I gotta sit down and just breathe.

Bobby and I were expecting to be setting up Homecare with an agency at this point and we're going to the movies instead. I went to my regular knitting group today and freaked out the girls. I know I still have a hurdle while I wait for a diagnosis, but geeze Louise. If my body isn't dragged down by all the paralysis I've been dealing with over the years? Mountains. I can climb mountains.