Sunday, December 23, 2007

Now What?


It's our first real day off, since Bobby worked yesterday. I'm wide awake and up anyway. Go figure. I had a leg cramp to be fair and putting my boots on and getting out to walk it off was the only way to get relief. Much better now.

I'm sitting here eating some luscious fruit from my sister in California - ripe pear and a sweet perfect orange. I've been doing a lot of junk food lately so she has really done me a great service here(thanks Debbie!). Yesterday we talked on the phone for an hour and a half and used our web cams. It is just so cool to be able to see your sister 3000 miles away in this modern age. Getting my PC to talk to her Mac sucks though - we tried lots of things and finally we just talk on the phone and use Yahoo for the camera. We're okay though with free long distance as long as the phone batteries don't die :^p

She had me open my other Christmas present. It was a
The Wizard of Oz music box that plays "King of the Forest". It's one of our favorite and most quoted scenes where Lion sings about Courage.

Courage! What makes a king out of a slave? Courage!

What makes the flag on the mast to wave? Courage!

What makes the elephant charge his tusk in the misty mist, or the dusky dusk?
What makes the muskrat guard his musk? Courage!

What makes the sphinx the seventh wonder? Courage!

What makes the dawn come up like thunder? Courage!

What makes the Hottentot so hot? What puts the "ape" in apricot?
What have they got that I ain't got?

Dorothy, Tinman and Scarecrow: Courage!

You can say that again! Huh?


Friday, December 21, 2007

Day 33 - Stick a Fork in me - I'm DONE !

7 weeks.

33 treatments.

I'm very fatigued physically - but mentally I'm so psyched that Radiation is over. No more 5:30 alarm and driving to Hopkins Monday through Friday. Woooooo Hooooo!

It'll take a few weeks for the fatigue to back off, then the steroid taper down as the effects of this final push of radiation (it was increased and focused this week) wears off. Then it's follow up with a higher dose of just my oral chemo five days at a time later.

I can handle that.

I've been blessed by good fortune throughout this.
Bobby's employer granted him the time so he and I could do this without outside help. When we unexpectedly did need help my sister moved in for nearly a week and kept me on schedule. I was spared the need for IV chemotherapy, a much more difficult road. I had a good drug that obliterated the nausea associated with my oral chemotherapy. My blood counts have been stable and I've had no major reactions to my treatments. We have good medical and prescription insurance. Except for my initial introduction into the radiation process, my contact with all medical professionals has been exceedingly smooth, competent, attentive and pleasant.

Go to The Johns Hopkins Hospital if you have cancer.

My Surgeon - Dr Alessandro Olivi
Professor of Neurosurgery and Oncology
Director of Neurosurgical Oncology

- The Scarecrow - my brain - who started me on this journey by convincing me I just found out I had a brain tumor.

My Radiation Oncologist - Dr Lawrence Kleinberg
Associate Professor Radiation Oncology, Molecular Radiation Sciences, Oncology, Neurological Surgery
Co-Director Steriotactic Radiosurgery
- The Tinman - my heart - who turned from shy guy to the one I always wanted to hear telling me I'm doing so well.

My Neuro Oncologist - Dr Stuart Grossman
Professor of Oncology, Medicine and Neurosurgery
- The Lion - my courage - who convinced me taking a drug proven for a related tumor but not starting research on my type of tumor until 6 months was right for me.

Cancer affected my family big time in 2005. My road had been a piece of cake in comparison so far. I believe they had a hand in that.

My mother passed away in November of 2006 at home with us. Immediately I felt a strong urge to take care of my own neglected medical issues. The signs from her were personal, specific and at times quite overwhelming. Or seemingly coincidence. Like being disconnected from a clueless customer service rep then calling a different representative who knew exactly what to do. God is busy. He knew I'd trust my Mom.

Thanks Mom.


Wednesday, December 19, 2007

Day 31 - 2 more days!

Two. A peace sign. That's what I held up right after treatment today. It made my therapist Kim laugh. She's my favorite and the one who started me on this journey. I'm so psyched to be done with this. And ready for phase two.

And Christmas.

Monday, December 17, 2007

4 more. . . but who's counting?

My appt with my Radiologist was canceled today - he's away. This was a surprise. I hope he's okay because another physician is going to do my last appointment tomorrow instead :( I needed to speak with somebody about some increased brain swelling symptoms today though and saw my usual Oncology Fellow. He upped my steroid again. I should be back on an even keel by Wednesday hopefully. I've put on 10 pounds - probably fluid cause my radiation mask was tight today.

Tomorrow I have my last visit with my Chemo nurse and make appointments for follow up with my Oncologist now.

Life goes on :)

Saturday, December 15, 2007

Day 29 - 5 to go

Gee I'm sorry I've been absent. My sister called me today and reminded me that I've been leaving folks hanging.

I'm fine. Really. My husband and I have had other interesting stuff not related to me going on for two weeks and hunkered down to ourselves for a while.

My hair stopped falling out. I'm a surry with a fringe on top, well top and right - which makes my hats a little lopsided. I still need that trim. My bangs came in, but I haven't messed with them much - hat on/off on therapy days messes 'em up and they need a trim before I wear them I think. I'll set that up later.

My blood counts are superb. Great White counts - no immunodeficient/infection worries. Great Red counts/Hemoglobin/Hematocrit/Platelets. Everything is "within normal limits" as we say in the medical field. Cool.

My face blew up like a big round moon two weeks ago, but that is because of the steroids. It'll go away after the effects of the radiation/brain swelling go away and I stop them. Hopefully I'll begin to regain the function I've enjoyed off and on since the surgery :) It comes and goes - but it's still there.

One of the guys in front of me Graduated on Thursday. He was late. They said he didn't want to come in. I have no idea what was up with that. I have enjoyed the folks I have met there. Helped a new guy get started - but I will not miss going every day. I plan to celebrate Friday. I may bake brownies for everybody. Yeah. Brownies.

I do get bushed. Just showering and dressing can wipe me out. I don't take naps - I rest. I tend to shut down quickly - and recover just as fast. The end of the week is roughest as the fifth day in a row of radiation draws near.

::speaking of which::

Did I mention I only have one more week? That means I'll be done before Christmas. Thanks Santa.

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!

Wednesday, October 31, 2007

The Witch of the East

It was bound to happen. Somebody finally pissed me off. Thing is, she didn't admit that I fell through some kind of crack in the floorboards under the well oiled machine and an appointment got screwed up somewhere. Even when I asked point blank what happened she ignored me. Repeatedly. She skirted my question and restated my new appointment information. Told me she had to go now. I can accept that things go wrong with scheduling when there is so much to co-ordinate. What I have a hard time with is ducking responsibility. So unfortunately I have dubbed a nurse the Witch of the East.

Bobby already thinks she dresses like Morticia and I think her makeup makes her look like Sylvester Stallone's mother.

Still. I don't wish a house to drop on her.

Monday, October 29, 2007


Bobby came home from the grocery store with these tonight.

Periodically he does that. Just because

he loves me.

My team continues to impress me. Seems like getting approval from insurance companies for certain drugs can sometimes be a bother. Paperwork must be submitted! My rad/oncologist nurse and My Pharmacist Roz (yes, I have a pharmacist) worked together to get my drugs signed, sealed and delivered without a hitch ~ much the same as my MRI snafu which was painless for me. They worked it all out over a period of three days with shipping overnight tomorrow at no extra cost. I was even approved for a larger amount of a drug in one case, impressing the pharmacist.

FedEx should bring me the goods tomorrow.

Thursday, October 25, 2007

The Noive!

Hunk: Now look here, Dorothy, you ain’t using your head about Miss Gulch.

You’d think you didn’t have any brains at all.

Dorothy: I have so got brains.

I feel so much better. Last night I announced to Bobby, “I can wipe my feet on the front mat”. Both of them. Since my surgery we haven’t had substantial rain and I haven’t felt the need to do that. But yesterday Bobby and I came in from a long and tiring day and without thinking I wiped my feet. My weaker right leg moved back and forth, picking up that right foot and placing it squarely down in front of where it had been - nice as you please. Then I swiped it behind me and shuffled it back under me, putting my weight on it while simultaneously picking up my left leg and repeating those steps with it.

I wiped my feet!

I’ve been feeling rather depressed about losing most of the amazing physical gains I had on the right side during that first week after my surgery. I still have some increased sensation, but a lot of the awareness of my body parts, called proprioception, has faded as mysteriously as it appeared. Last night’s little rain episode was a big boost.

Did I mention that yesterday was exhausting? I got the call from my terrific insurance nurse Tuesday with the go ahead for my MRI. She just caught Bobby and me on the way to Hopkins We were able to schedule it for yesterday along with two other appointments and now I believe we’re DONE until treatment starts. Wahoo! Every time someone said, “You’ll have to schedule a blah blah blah before your treatment starts” I said,” Can I do it today?” So rather than go back again, this was our day (times approx) for a CT scan.

  • 8:45 Group teaching for oncology patients
  • 10:30 Met with my daily oncology nurse Kim
  • 11:30 Met with radiation oncologist’s nurse for teaching and to discuss treatment plan
  • 12:30 Met with both of the medical oncologist’s research nurses
  • 2:00 Bloodwork
  • 2:25 Late lunch at the hospital in an actual restaurant with a waiter and a sushi bar
  • 3:15 Super MRI – New and improved! With bigger magnets and louder sounds! Delayed, but not as long as they said.
  • 8:15 Home! With Starbucks and Chinese in hand.
I have no idea what anyone said to me. Oh, I have all the materials, and I’ll go over it and Bobby and I will decipher it all and remember. But still. Haven’t any of the professionals there heard the expression “less is more?” In the group class, the person talked so fast I was hearing her, but not absorbing any of the details - just sort of zoned out. A lot of her subject matter was aimed at folks with IV chemo. I felt guilty sitting there with my radiation and oral chemo with lower side effects self.

One thing is for sure. I feel safe. I feel they all know what they are doing, have been doing it for years, and are very up to date with the way it should be done today. They are confident in themselves and in their abilities. They can make decisions, adjust someone else’s schedule, and empower a pissed off lab tech to draw my blood painlessly with one stick in my “bad” arm even though I came in the back door with my paperwork and lab slips in my hand. They'll do anything to get me better.

People at Hopkins have so got brains. And hearts. (and homes . . . the noive!)

Tuesday, October 23, 2007

Why, oh why can't I?

How is it that a gigantic institution like The John can't consolidate their department billing? Take the general category of "Radiology". Inpatient doesn't speak to Outpatient who doesn't speak to Radiology Oncology who doesn't speak to Radiotherapy.

Or something like that.

Thank heavens for a friend's husband who gave me a clue a while back, and I have a wonderful nurse case manager at my insurance company who is dealing with this for me. I lined her up before my surgery after hearing about his woes and how a case manager helped him. She's working directly with the lovely lady in the financial/insurance department at Radiation Oncology to make it happen/get the approval.

I just waited for the phone to ring today.

For twenty seven years I did things like that every day without batting an eye because it was part of my job. Yes. I was aware that what I did was sometimes that one thing that made a difference to a patient that day. They say what goes around . . . comes around. Good things will happen for those two ladies.

My appointment is tomorrow.

Thursday, October 18, 2007

The Tinman

Oil Can. -The Tinman

The squeaky wheel gets the grease. And the patient who calls her nurses gets her Radiology Oncology appointment. At 4 PM Tuesday I was still waiting to hear about moving my appointment up from November. Fed up, I left a message at the Radiologist’s office that I was seeking a new radiologist. I emailed my surgeon’s nurse practitioner the same. I left a message for my contact nurse with the medical oncologist. I voiced my displeasure to my insurance company RN case manager.

Wednesday I got a pleasant call that my appointment with the Neuro-Radiologist had been moved up to this Friday morning.

So Friday I dance with the Tinman since it took an oilcan to get to meet him.

Tuesday, October 16, 2007

It's a Twister

Better get under cover, Sylvester. There’s a storm blowin’ up, a whopper.

--Professor Marvel speaking to his horse as the twister approaches.

Last week I got my results on the part of the tumor I did have removed. The other part of the tumor could not be removed because it would cause more paralysis. That will need radiation for sure. Every day Monday thru Friday (because brain tumors are off on weekends don'tcha know) Even with six weeks of daily trips to Hopkins, continuing my physical and occupational therapy may actually help keep me on an even keel stamina-wise. A regular schedule seems to be the key. Regular meals, naps, exercise etc are good so my body doesn’t slip further. Radiation’s biggest side effect is fatigue. Fatigue is a polite word doctors use for feeling like crap. How much? Don't know. Right now I’m in the habit of 30-45 minutes of upper body work every morning before I leave the bedroom. Hopefully I can keep that up since mornings are best for me anyway.

Now for the interesting part. My type of tumor isn’t that common. It does however have a “marker” in the genes of the tumor which indicate I may respond very well to treatment. Cool! Who need those bits of Chromosomes 1p and 19q anyway?!? Having that marker also makes me a great candidate for oral chemotherapy. With other types of brain tumors, it is given at the same time as the radiation and is the current best treatment available. For my tumor it is optional. It’s a pill, very little side affects if any and since it is optional for me, I can choose to stop it if I do have a bad reaction to it.

The most frustrating thing for me right now is waiting for the appointment with the radiologist. Grrrrrr! Seems he has to approve moving me up in his schedule, as my surgeon and medical oncologist have requested. I finally insisted on the next available at least, so I have something in place that can be cancelled when/if he okays moving the appointment up. Yesterday marked 1 week of waiting patiently for a date


That’s what I’ve been doing the last week. I was seeing my surgeon, the medical oncologist, being evaluated for physical and occupational therapy, and attending my great-niece Megan’s 10th birthday party. Oh! Throw in a four day knitting convention during that time. I wasn’t sitting on my butt wringing my hands.

And I need a nap.

P.S. Don't worry, no more painful seizures. I've had mild ones like I've had for years, but they are fewer than before - probably because I'm more diligent with my medications.

Tuesday, October 9, 2007

Of Course, Some People Do Go Both Ways

Scarecrow said it. I'm doing it. After a truly nasty seizure, I've lost some of the gains I made. I've had partial incomplete seizures for sixteen years. The type hasn't changed thank heavens. No loss of consciousness etc. But this one was a bear. Over 10 minutes and painful. Screaming kind of painful. Scare your husband to death painful. Immediately after there were weaknesses which we checked out with the doctor on call. Since then I've lost a bit of that momentum, even slid back some in ways only I can notice. Boogers. But then I've been slacking too.

We get up at 12 and start to work at 1! Take an hour for lunch and then, at 2, we're done!

Jolly good fun! - theOzmites

I shouldn't be sitting here in front of the computer or on the couch knitting and "taking it easy" as admonished by everyone. Don't beat myself up you'll say, right? 'kay. It took me a while to set up the physical and occupational therapy. The first week was too much input to my body for me to handle emotionally. I probably should have been pushing myself more though in the last few days rather than just wait for the formal therapy to begin.

Today I go to PT and OT and get this trip down the yellow brick road started.


Saturday, October 6, 2007

Bring Me Her Broom

I'm going to be a celebrity. I am to be presented at a Brain Tumor Conference of some kind at Hopkins. They get all the big brain guys together and reveal my juicy details one by one. Think House only bigger. I wonder if they'll have popcorn? I'd love to put on a lab coat and sneak in. They'll put their heads together and have fun of trying to figure me out and where we go from here. It's not just one doctor saying, "Oh, you need an oil change". It's Dorothy, and Scarecrow, and Lion, and Tinman, and Toto too. Trustworthy folk with a mission.

I am the great and powerful Oz.

Even Oz can be put on hold though. I was all set to go to my regular knitting night. Waiting for a call regarding all this kept me from it. Grrrrrrrrr! On the positive side, I opened a new box of cereal, poured a mug of Frosted Mini Wheats, opened the fridge and reached in with my right hand for the milk which I also poured with my right hand. Picked up the spoon I aimed for and the mug and carried it in to the computer without spilling it and ate it. With my right hand.

Add those things to the list of things I could not do last week.

Ohhhh! Ohhhh! Ohhhh! I can tell which toe Bobby is touching! I could barely tell if someone was touching me anywhere on my lower leg. Now I can differentiate the toes.


Wednesday, October 3, 2007

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.

Sunday, September 30, 2007

There's No Place Like Home

It’s like I clicked my heels three times and repeated those words and the years have rolled back like Dorothy Gales’s house getting sucked back up into that cyclone.

There’s so much to say and the emotions are so, so overwhelming that I have to slow down because it’s bad for me to hold my breath when I cry with joy these days. I had brain surgery on Wednesday and came home three days later on Saturday in better shape than I went in. I’m giddy. I feel like Scrooge on Christmas morning. I can’t write much more now ‘cause I can feel my pulse rising. The tears won’t be far behind and then comes the sobbing and the screaming and the OH MY GOD I’M OKAY!

Thank you all for the prayers and notes you have left. I am not speechless or overwhelmed. I AM after all, The Goddess as Bobby constantly reminds me ;^D

Seriously. Thank you.

I know from personal emails that I didn’t enable all comments here at my brain blog. Non-Blogger folks probably couldn’t say hello. You can leave me a message now if you want to say hi.

Tune in tomorrow.

Thursday, September 27, 2007


This is Bonnie's husband, Bobby, making an entry because Bonnie is still @ Johns Hopkins Hospital.

The surgery seems to have gone well. The surgeon is very happy with the results: removal resection of tumor with pathology report to follow.

Bonnie is in good spirits with minimal negative effect from surgery.

Bonnie is knitting again and expects to see everyone at Stiches later this fall

Tuesday, September 25, 2007

This is a true story.

In 1991 I fell off a horse, had a concussion and lost about an hour of short term memory. A trip to the hospital and CT scan showed no intracranial bleeding so I didn’t need an emergency surgery. But then the ER doctor showed me my films and said, “We see this other shadow and recommend you see a Neurologist”.

There were dark fuzzy specks in the upper left side of my brain.

Scared shitless I went through all the testing. When finally referred to a surgeon I had a date in 10 days. Craniotomy. Shit. Pop the top. Biopsy the tumor and take it from there. I cried, went on a planned working vacation to sing in Georgia and then told my family.

I didn’t get a second opinion. I didn’t spend all day pouring over the journals and books seeking knowledge of this thing in my head. I didn’t see a Neurosurgeon who specializes in brains in a University setting and does more than a handful of craniotomies in a community hospital. I wanted to stay at the hospital and Operating Room where I worked and knew everyone.

I was foolish.

My surgeon told me the biopsy was negative. It was not a glioma, but gliosis. Inflammation. He used those words. Every year I had an MRI and every year he told me it was negative, the tumor hadn’t grown. But it could change. Any day now. It’s like a time bomb in my head and affects me every day.

After surgery I had paralysis and seizures. Physical Therapy helped, but I wear a brace on my leg, and over the years the muscles have atrophied. The anti-epileptic drugs made me sick and affected my ability to think clearly. They cost me my nursing and singing careers. I hated the “poor Bonnie” thing and hid my problems and fears well, developing a fictional cover story for what was happening to me and how afraid I really was. I’m a good actress and tried to make everyone else feel okay about this.

Well sort of, THIS is a true story.

Seems the brain surgeon biopsied the wrong area and my tumor was untouched. My original surgeon died and several years later I was encouraged to a see a new neurosurgeon to continue follow-up. He was puzzled. He put 2 MRIs up on a viewer, the first time I’d ever actually seen my brain. There was a big hole where some of my brains should be and a big dark blob next to it. It went something like this:

Here’s your brain. Here’s the tumor before surgery. Here’s the tumor after surgery. There’s no change. All this adjacent tissue is removed, but the tumor was not biopsied that I can see. I don’t know what tissue he sent to pathology, but it was not of this tumor. I want to schedule you for a biopsy.

That was 1998. I had just gotten engaged and life was good. I got a second opinion in New York with a terrific specialist who does only brains. Dr. Brains ‘R Us said

  1. Is it a tumor? Yes, probably a very low grade.
  2. Can I take it out? Yes, modern equipment can decrease damage.
  3. How would it affect you? More paralysis, probably most of your right side.
  4. Would I have this done? No. Not now. Go home. If your symptoms change, your doctor at University of Maryland can evaluate you and I’d be glad to see you again if you want me too.

So I went home and dealt with it for 9 years. 9 years. In the last year or so I’ve let it drop that this tumor is still in my head, was untouched and I had a wrong site surgery. Yeah, yeah, yeah, I could be a rich woman. But he’s dead. And my brain is gone. Every year I have an MRI and every year my neurosurgeon tells me it hasn’t grown. It has not changed at all in 16 years or maybe longer, but every year he wants to open my head and expose me to more grief. Every year I think of the vibrant symptomless body I had before some crackpot scooped out a quarter of my healthy brains and every year I say no.

Until this year.

In January it was bigger. He gave me the names of a surgeon at Hopkins and an Oncologist so I could get more opinions. I ignored all of his advice but my symptoms were increasing. Finally in August I went to see Dr Olivi, Director of Neurosurgical Oncology at The Johns Hopkins Hospital. He said I have to forget about the previous surgery and treat it as if I just found out I have a brain tumor.

I’m having the surgery.

On September 26 I’m having a Craniotomy and Brain Biopsy at Hopkins. It seems so strange, but I’m not as scared as I should be. I’ve been living with this for so long that it’s like going in to have my Gallbladder out again. I’ve had all these weird signs from my Mother who died 10 months ago. Signs have been pointing that everything’s going to be okay. I believe she’s been pushing me to finally get the damn biopsy done so I can put my mind at ease after all these years.

So wish me well, say a prayer, think of me in the coming weeks while my adoring husband and I figure this thing out. We’ll be okay as long as we do this together.