Friday, November 30, 2007

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?

Monday, November 26, 2007

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.


  • 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

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.

Wednesday, November 21, 2007

Day 21 - Bye Bye Hair

Good thing I'm liking the hat look.

This morning when I got up my scalp was a little tender around my incision area and I had Bobby take a look. "A little pink" he said but not inflamed. I just wanna keep an eye on things ya know. Can't be too careful and if my skin gets sore I want to protect it. I looked in the mirror. My hair grew in nicely. I might be able to get away with no hat on Thanksgiving at my sisters' house if I use the curling brush and sweep it like my hairdresser Julie does. Lemme try it . . . I got a clump of hair in my fingers.

Just like they said. All at once. It's mostly going from the area of my surgery, but the rest of my head too. I tried it. No eyebrows slid out, but I didn't tug on those very hard. I wish I could have a nice smooth head. That's my only gripe about this. The incision will make me lumpy. Maybe a tattoo . . . nah. Bobby and I have a law against tattoos, even temporary ones.

I am however going to get my best friend one for Christmas. She is getting a blue penguin on her ankle with my Godson's initials on it. How cool is that? John would have loved a tattoo. I wonder what he would have gotten on his body? Where? At 15, the possibilities would have been amusing. I'll have to ask his Mom if he ever talked about it. We go shopping for the tattoo artist soon. Know a good one?

I'm feeling well - ignoring my need for a nap, eating well - need to drink more water, and walking a lot more if a bit awkwardly in this still adjusting body. Treatment itself is a snap. Scheduling this week has been weird. Because of the Thanksgiving holiday, the plan was go in Sunday through Wednesday and everybody off the four day weekend. Cool.

It's Wednesday and at 7AM they canceled my appointment.

My beloved 6EX Winkies are down with the flu or something and aren't expected to be up and about for the rest of the day. It may seem strange, but I want my radiation dammit. Those Winkies are marching those rads in and killing those totally useless tumor cells, thank you very much. Oh well. Five days off shouldn't impact the outcome of my therapy, right? Still, I just emailed my Nurse. I'll come in on the weekend again. If there are any more delays I'll have to go Christmas Eve.


Friday, November 16, 2007

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.


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.

Monday, November 12, 2007

Day 8 - nirvana

I've signed up for a massage every week at a nearby spa and it's one of the better things I've done in my plan. I've ignored most of my pre-existing pain from the years of paralysis. My right side is weak and the left side must compensate. Both sides fight so I stay upright. Relieving that seemed to make sense in order to tackle other priorities for my body. I've been twice now and I tried a different therapist, hoping to find the right match eventually. She already had my history so I talked briefly about my desire to work on my right leg mostly, because aligning that seems to fix the shoulder too.

Did you ever sit in one of those Shiatsu chairs at the mall? She slid her arms under my back and in one minute I swear I felt better. There were other amazing things in store for me. While doing Swedish massage on my right leg I could feel some things I never felt before. On my upper back the myofascial work felt like she was going to push my shoulder blade right through to my chest. It should have been painful. I just breathed and as my sister says, just went to my happy place. Here's the weird thing. When she switched to the left side, I experienced pain with less pressure. The brain is a complex organ.

Today my right leg is about an inch less in circumference.

I kid you not. I noticed it right away the next day when I put on my brace. The leather strap around my calf slid in an inch more and I can slide my finger up and down all the way between the bar and my leg on the side. Even at the top. I'm so psyched. I'm walking upright and my balance is off so I have to be careful. Luckily I have an appointment for a new brace next week. If only insurance companies recognized the value of massage therapy for those who truly need it for medical conditions affecting the muscles.


Sunday, November 11, 2007

Day 7 - A Bit of a Scare

Friday went swell. The routine is getting settled in and we are developing a ritual. I'm not nauseous thanks to my return to the Anzemet every morning and my appetite is normal. Puking ain't fun. Yup. All systems are go. But I've got to stop running on empty. I feel so good all the time I'm not resting like I swore I would. Then I run out of steam at times when I'd rather be doing something. Gotta get a handle on that.

Friday night proved it.

My therapy can cause bowel concerns and when I saw what looked like a bowl full of blood I had a panic attack. We called Hopkins, went to the hospital and all is well. It's just a pain is the ass (snort) and will be dealt with swiftly. Reality has reared it's ugly head though. I'm scared. The side effects of this are serious and I am paying a lot more attention to the guidelines now - before they become a necessity.

Prevention is the key, eh?

Thursday, November 8, 2007

Day 4 - A Basket of Goodies

Well now. It seems that Dorothy here has a new cast member. Remember her basket. In it she kept all the things she needed for her journey. A picture of Auntie Em to show Professor Marvel. A hankie to dry the lion's tears. The Tinman's oil can in case they needed it later (and they always did). So now I have a basket. And in mine is my newest best friend ~


Remember all that high-falootin' talk about not having any nausea? I've been taking a preventative strike against nausea with that drug until today. Today I didn't take it to see if I was going to be able to go with one less drug in my system as desired by me (and directed by my team) - and barfed in the bank. It's been a queasy day of nibbling and napping and medicine, but I think tomorrow will be back on track. I seem better if I'm nibbling. No wonder there are baskets of crackers, hard candy and mints all over the treatments areas at The John.

I'm sure I'll need more in my magic basket before this is over.

Until then, I just pray the nice people who invented Anzemet got all the lemon meringue pie they deserved.

Wednesday, November 7, 2007

Day 3 - Munchkins

On Monday and Tuesday I will always have appointments after treatment, but the rest of the week it should be smooth sailing unless something pops up when I check in in the morning. I don't even have to leave the level we park on. Today I was in-and-out in 30 minutes. Schweeeeet!

Johns Hopkins has a very efficient system for us. I have an orange "Hopkinscard" that I scan as soon as I get in the door of the Sidney Kimmel Building where everything takes place. The machine spits out a sheet of paper telling me each appointment I have for the day, where they are located, phone numbers at those departments, and a place at the bottom for my vital signs for the day in case I need them taken. I can then proceed to do my thing without worrying that I've forgotten to check in with so-and-so or they can slip in surprises like extra lab work if necessary. They won't call me at home, afraid I'll miss a message telling me to come in early or stay late for something important.

Hopefully the system works.

When my sheet said to see Mr.R in Registration on Tuesday - I put on my happy face even though I thought I wouldn't have to go up there that day. Some days computers are cranky, and Mr. R is one of the Munchkins (yup!) who has to kick his machine sometimes. That was the sad truth on Monday and Tuesday. He had a room full of people and a scanning machine that was just not happy. Between setting up folks for their visits and hauling his butt out of the room to reset the kiosk - Mr. R was lookin' low by the time he got to me. But he knows I'm patient and his smile is genuine for me. "You need liquids, get some water", I say. "I got tea" says he, and soon after he's slurping away and the raspiness I heard with the previous patient leaves his voice. We've done this a few times now, and the exchange is brief. Hand him my card, verify my birthdate, sign here . . . and tell him I appreciate everything he does.

"And keep drinking that tea now."

He laughs and says "You have a good one Ms. Martin.

Now I know saying things like have a good one and have a nice day just roll off the tongue for most folks. But I try to make people, especially employees who are just doing their jobs, feel they are not getting the remote control expression from me. Sometimes I hit it, sometimes I don't. With Mr R. I think drinking tea may be a connection between us, who can say. Something he can look forward to. To make him really smile when he sees my name pop up on his screen. Maybe he'll give a thought to what he'll say to the next person.

The Good Witch of the North called me today just to see how my first few days of treatment went. How many insurance companies have this service I wonder? Now that I'm safely underway, she'll be more in the background and we'll talk again around Thanksgiving, but I know I can call her anytime for anything. A big plus for me is she has a background in Oncology Nursing. We talked for about fifteen minutes about the last few days and my follow ups on a few things. Today when we finished I told her I had to go now. I'm fine now you see, Glinda - on my way down the yellow brick road and you should call another patient who needs you now - because you are good at what you do.

Tuesday, November 6, 2007

Day 2 - piece 'o cake

So now I'm over the 1st day of school jitters. Things went a lot smoother as far as actual treatment process time today. I had a whole passel of students to observe and they were not in the way at all. One got to take off my head apparatus at the end. I really must post a picture of the very cool hockey mask that was molded to keep my head in perfect alignment for the Winkie-rays to do their thing. It resembles a cross between a strawberry basket and the water tube face from the movie The Abyss if you remember that movie.

I'd write more but Bobby just showed me dinner. Left over Chicken Picatta from dinner with Sul and Jim at Carraba's Saturday night and fresh pasta with some kind of sauce he concocted. MMMMMmmmmmm!

Monday, November 5, 2007

Follow the Yellow Brick Road - Day 1

Cast of Characters:

Dorothy Gale...................................Me!
Toto.................................................My faithful husband - where I am always home, no
heel clicking needed
The Wicked Witch if the West.........This fr!@#$n tumor
The Wicked Witch if the East.........She started as the WWotW, but I like her better,
so I squashed that image
Glinda, The Witch of the North.......My Aetna insurance nurse - waving her wand
over my smallest troubles
The Scarecrow................................My surgeon - my trust in him brought me to this
Yellow Brick Road
The Tinman.....................................My Neuroradiologist - it took an oilcan to get to him,
but he has a heart
The Cowardly Lion..........................My Neuro-Oncologist - "Put 'em up!...I can fight tumors with
one paw tied behind my back.
The Emerald City............................A green good luck talisman I wear for treatment
The Ruby Slippers...........................Decadron - protecting my brain and boosting my
right side in the process!
The Winkies....................................The rays from my beloved 6EX treatment machine,
marching in for battle
The Bucket of Water.......................Temodar, "I'm melting . . . MELTING!
. . . Oh what a world
. . . who ever thought a little pill like you could have destroy my beautiful wickedness
. . . (Ding Dong the Wicked Witch of The West is Dead)

I used a scene with some of these friends during my few short minutes of therapy today, in fast forward.

In my head I saw Toto leading Scarecrow, Lion and Tinman up the mountain to the Witches Castle. They bonk three Guards over the head, steal their uniforms and sneak in to the castle to free Dorothy. The Guards chase them down at the command of
the Wicked Witch of the West, but a carefully thrown bucket of water melts her flat. Turns out the Guards were under a spell and are pleased as punch to help Dorothy out.

So you see! Radiation and Temodar are my secret friends. I was absolutely calm once I got in the door. Last night was a bit nerve wracking, but I had everything ready to go for this morning so I didn't have to think about anything. In the shower this morning I worked out the details, made my plan and planned my visualization for treatment. I even changed the Wicked Witch, so I could melt the tumor. (Besides. I
have now met her properly and will deal with that nurse often)

I'm not sick. I'm not tired. I ate a hearty lunch and went to a yarn shop.

Life is good.

Did you know the Guards of the Witches' Castle were called The Winkies?
They sing the Brain Tumor Zapping Theme Song.

The Winkies: [singing repeatedly] Oh we oh, yooo ho!