Happy Friday! (yesterday)

Bobby came home with these and my favorite Venti Mocha from Starbucks yesterday. What a way to brighten the perfectly grey and ordinary day I was having. He bounced in grinning "Happy Friday" and presented me with gifts of flowers and a knitting book. The coffee soon followed. I was overwhelmed. My Boo has an uncanny knack for timing. Earlier I had to cancel Physical Therapy due to some patchy ice still on our sidewalk and the cleaning lady that was supposed to start canceled too. My day was left boring and unproductive. Until he bounced in all sunshiny and loving me.

Life is good.

Sometimes I have to remember that here at this blog. All is not doom and gloom for me 'ya know and I need to let you guys knot that in spite of the veeery slow progress on the physical front - I'm still happy and having fun. My life really doesn't revolve just around this cancer thing. I can't balance, stand or walk right now, but that's about it. (Okay, a bit of an exaggeration) But gimme my scooter and I'm off full of piss and vinegar. When Bobby can get me there - I'm a speed demon. When I can load and unload her myself again, look out. Thursday and Friday were great days of knitting with friends for instance. You can click here to read about it on my knitting blog "tinkknitz" if you like.

Prepare for another Happy Friday announcement though.

Baby Steps

They tell you you'll have fatigue after radiation.

"They" were right.

I don't know how it affects other people, but for me it feels like my body weighs a ton. Lifting my legs to walk feels and looks like Frankenstein. Add the balance of a Weeble (remember them?) and you get the picture. Standing still is the worst for some reason. I tense every muscle just to stay upright. I am encouraged by my most recent brilliant idea though. I changed physical therapists. Prior to surgery I decided to build some strength, went to Physical Therapy and loved my therapist. After surgery I needed Occupational therapy too and my original facility didn't offer it so I had to change. Well, OT was done a long time ago and I just wasn't thrilled with the chick I was working with. I was doing the same stuff week after week - and this when I was walking, climbing stairs and had plenty of energy. I would be sitting there doing nothing and have to call over to where she was chatting ask her "hey - what's next for me lady?".

I went back to the first place.

Huge difference in my progress now. Carmen is professional, pushes me and sticks with me. I actually improve instead of just repeating the same thing over and over. New things are added. I find myself actually wanting to incorporate small exercises and balance practice in my daily routines as she suggests, like a good girl. Muscle tone and my messed up leg rotation (walking with my right leg pointing to the outside) is being addressed while I'm sitting or lying down. This way I have more energy to work the muscles and don't waste it trying to stand. The standing and walking may not be better, but moving around when sitting, lying down, rolling over in bed (groan!) and my general sense of well being is better. Now I can lift my legs a bit better and my home exercises are making more sense. Imagine that.

Sheesh.

And this week I moved my right ankle in 18 circles. I haven't done that in eons. I cried. Wearing a brace all day basically freezes that ankle in one position. The muscles are contracted. It has bad arthritis. I'm workin' it hard baby. I'll be needing the muscles in that leg and ankle for better mobility in the errrr . . . future perhaps. I went to a demonstration of the NESS L300 Foot Drop System yesterday at Hopkins which was very cool. You may remember it has been suggested for me by a Physical Therapist and Physiatrist there. There were patients trying them out for the first time and were walking without their braces. In a nutshell, when you take a step - the apparatus give a slight electrical charge to the leg muscle and the foot moves properly instead of dragging. There are many baby steps to be taken before that one can be addressed for me, but hey. A girl can dream.

My Godson John is my inspiration when I work out at home. He was a never give up kinda guy and I have a picture of his smilin' face in front of me right now. I conjure it up when I need inspiration to keep going. To pay attention and do it right. To finish those last three repetitions. To exercise the left leg too like I'm supposed to. To stop and rest the muscles like she tells me too even though I feel like I can go on. To breathe.

Yeah. Baby steps, John.

Phase 3

So now I just move on with my Lion, Oncologist Dr Stuart Grossman.

For the first five days of the next six months I'll take the same oral chemotherapy at home - Temodar. The dose is being increased and they warn it may increase the nausea, but I'm gonna trust my blessed Anzemet to take care of that. Both are being delivered today. I'll continue to get weekly bloodwork. I'll be followed by his most excellent nurse practitioner Clare (love Love LOVE her). The research nurse will call me once a month. Every two months I'll see him.

Like I said. Phase 3. It did break down neatly didn't it?

Surgery. Radiation/Chemo. Just Chemo.


Then what?

Uh, I'm not dying

It seems there might be family members who think I am very ill.

I am not.

My sister equated my steroid swollen face with the faces of other family members who died from cancer and has been very frightened that I am dying.

I am not.

• With brain surgery and brain radiation there is specific swelling in the brain that needs to be controlled temporarily with steroids to prevent (don't laugh) brain damage.
• When the radiation stops, the swelling goes down and they stop the steroids.
• Life goes on.

Now then

• Many of the symptoms I have had (severe fatigue, difficulty walking, shaking, confusion) were from the steroids themselves - it's a balancing act.
  
• On Thursday, Feb 24 I had an MRI and appointment with my Oncologist.
• My swelling is gone.
• My steroids can now be safely stopped.
• They have already started.

Woo Hoo!

Ocean City

What happens with the Sisters stays with the Sisters.

Bad Blogger - No Cookie!

My sister just informed me that people who love me are worried about me because I haven't posted here in quite a while. Guilty as charged. Here's what's happening.

The joy of errands with my sweetie is the only time I get out of the house to "see the world" as he says. Last night we happened to be in Laurel and used his new Garmin navigator to find a barbecue. Good Barbecue! (wish I could remember the name of it so I could tell you) Special thanks to John for the terrific advice on the GPS features to look for. I gave it to Bobby for Christmas and it's lots of fun.

We have been to the movies a few times.

• I am Legend - C - Don't get me wrong. I really liked the first half. Will Smith. What's not to like? But I loved Omega Man with Charlton Heston, the original film. This one started out great. Until the CGI creatures came. For me it died then.
  
• No Country For Old Men - A - "What's the most you ever lost in a coin toss?" Javier Bardem portrays the evilest dude on the planet. Josh Brolin pulled an unostentatious lead out of his butt. Tommy Lee Jones plays Tommy Lee Jones. The story is not predictable. See this movie. See all the Cohen brothers movies.
  
• Sweeney Todd: The Demon Barber of Fleet Street - A - I love a musical. Johnny does his usual over the top and excellent thing but Helena steals the show as Mrs. Lovett in her opening song. Director Tim Burton rocks.
  
• The Bucket List - B - Predictable and shallow plot but this movie wasn't about the plot. I went to see a comedy and Morgan Freeman and Jack Nicholson being funny was good enough for me.
  
• Charlie Wilson's War - B - Like Depp and Jones, Tom Hanks does his usual thing. It is Julia Roberts who created a historical figure I believed. Oh. And I learned something about what happens when good intentions run out of money and political support.
  

I've been doing uhhhhhh, nothing else except some medical things and the few knitting events I am able to get to on good days. That really perks me up though and I feel bright eyed and bushy tailed spending time with the girls and some string. I wish I could do it more often. The most limiting factor is sitting and standing. I have to use my scooter exclusively now unless I'm with Bobby. I can't rely on chairs being high or stable enough for me to get out of. Loading my scooter is an effort too. I always have to sit and rest before driving away - which takes up a handicapped spot but hey - that's part of my problem, isn't it?

Physical Therapy is on hold for several weeks. It just wasn't productive. I addressed the fatigue issue with my therapist, wondering if I was befitting at all and wouldn't my insurance dollars be better spent when I was stronger and it could actually make me better. She agreed. Besides, I have had an evaluation by a Physiatrist who has an opinion that I may be able to loose the brace - something I am taking with the biggest grain of salt I can imagine to prevent disappointment. Today's medicine is amazing though and I have to let the professionals guide me, right? I may be a nurse, but I know nothing about this stuff and am trying my darnedest to accept good news.

Look how the brain surgery went.

A New Year

I thought starting 2008 would be some how very profound for me. It isn't. We went to bed last night and Bobby reminded me it was New Year's Eve. It is? This morning we wished each other a bland Happy New Year and went about out daily routine.

That's what we do every year.

It's nice to be normal again.

Elsewhere on the home front, I'm getting more and more tired. Tired isn't really the right word. Fatigued is what they say in the medical literature, anywhere up to 3-6 months more. My body still feels every thing. All the sensations are still there(yaaaay!) but the weight gain from the steroids - or other factors - seems to have thrown my balance off. My feet feel like lead and I have to walk veeeeewy cawefully (as Elmer Fudd would say). Leaving the house is precarious at times. I've been resisting those naps still. Getting my brace off during the day is a pain and I tore up a sheet the time I tried wearing it to bed. I'm "resting" I keep telling myself, but I do that all day really. Computer, TV, rarely knitting. My knitting is weird right now. The awkwardness is there too - heavy. I prop my right elbow up on a pillow but my hands still make the stitches a bit loose. I think I need to use one size needle smaller right now.

Last week I screwed up and got my bloodwork Wednesday instead of Monday. I'm supposed to call the nurse Wednesdays about it anyway and I have other errands to do that day. I goofed. They faxed the results to me and it was completely normal, my nurse didn't even call me about it. I guess I didn't commit such a bad sin after all. Then yesterday the labs closed early for New Years Eve not just New Year's Day mind you. So I gotta wait till Wednesday again :^P

My cognitive function is . . . interesting.

I feel I am thinking clearly although some multitasking is difficult late in the day. That's an old problem that hopefully will leave with the fatigue. Typing is a bear all the time though. My fingers don't cooperate with what goes on in my head. I think some of that is physical. But my sense for sentence structure and order seems a bit off to me. Sheesh. Proofreading is even a nightmare. Thank God for spell check too.

Do I sound like me?

I missed wishing a Happy Christmas to everyone. Mine was truly excellent this year.

• I bought a lot online
• Nothing was bought just to "get them something"
  
• We wrapped as we bought, not at 4 in the morning Christmas Eve
  
• As usual, presentation is everything - I love to decorate packages
  
• I got Bobby two great gifts, knowing he would understand. He said "I have you."
  
• I had a good long Christmasy talk with my sister in California via webcam
  
• I spent time with my Dad on Christmas Day instead of New Years
• We got to actually visit and converse with my local sister's family Christmas Day
• I had the stamina and energy I needed Christmas Day
  
• At our periodic extended family breakfast the Saturday before Christmas, I made sure to spend time with Aunts, Uncles and cousins.
• Our only decorations were lights on our big spruce tree outside with lights until Bobby surprised me with the indoor one and hung one ornament(our favorite) Christmas Eve. I love him.
• We went through two charity light drives this year The Winter Lights Festival in Seneca Creek State Park and our now traditional "Uncle Bobby's Starbucks hot chocolate" lights with my sister and her granddaughter, this year at Columbia's own Symphony of Lights.
• And yes, I got presents. Thoughtful meaningful gifts. My husband especially filled my knitting world with abundance from several different local yarn shops and both sisters chimed in. It was the knowing what I am obsessed with these days that touched me most.
  

Maybe Christmas, he thought, doesn't come from a store.
Maybe Christmas... perhaps... means a little bit more!

The Narrator
How The Grinch Stole Christmas by Dr. Seuss