Tuesday, January 29, 2008

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?

Monday, January 28, 2008

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!

Sunday, January 27, 2008

Ocean City

What happens with the Sisters stays with the Sisters.

Wednesday, January 16, 2008

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.

Tuesday, January 1, 2008

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