Now What?

So.

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?

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.

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.

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 :)

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.

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.