Sandy Beardsley
Living with a Brain Tumor
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05/22/06
Living with a Brain Tumor
Filed under: General
Posted by: Dan @ 9:18 am

Yes, Living with a Brain Tumor.

As we said in yesterday’s post, we will use this post, our last one for a few days as we drive home starting on Tuesday, to explain Sandy’s condition, prognosis and the next phase of her treatment in more detail. We also posted a lot of photos yesterday if you haven’t seen them.

It is important that everyone understands that behind her glowing smile in those photos there is a fight for life going on… and we don’t want to waste energy repeating in person where she’s at and what’s to come. And also to make it as clear as possible what’s happening. So please consider this information sharing as an effort to make things as easy as possible for Sandy and myself. It can be exhausting and draining to answer the same questions and tell the story over and over - and just to know that it’s not understood what is going on. To most of you who have been reading this blog, and reading between the lines sometimes, the words below will be nothing surprising. And though they are profoundly and painfully difficult for me to write, I am fighting back the worst of fears and trying to hold on to life… and hope.

So here’s how Sandy is feeling, what we know and what is ahead for the near future, as near as we know…

Since her surgery in October ‘05, Sandy’s brain tumor has been diagnosed as a Glioblastoma Multiforme Grade 4. This is one of the worst and fastest growing types of brain cancer. The statistics show that it is very rare for people with GBM tumors to survive very long - sometimes people die within a month, sometimes a year, sometimes - and rarer - do they live longer. Of course, we know these are just numbers, but they are real numbers. We can’t ignore them. But we’re praying hard and counting on it that she will be one of the exceptions to the statistics.

We met with her neuro-oncologist on Friday and he showed us her post-operation MRI images on a computer screen. The new surgery site and the surgery site from October (about 1-1/2-inches apart) are plainly visible - each one a 1/2 to 1-inch diameter area of her brain that is not there. In between and spreading beyond these two surgery sites he pointed out an area of lighter colored wispy lines (which they had also seen on her pre-operation MRI), indicating an area of new tumor growth. Her neurosurgeon determined after seeing the MRI the day of her surgery that it was too risky of an area to operate on - it would have definitely caused some vision loss and other deficits. So they stayed with the plan to remove the active tumor area that was more safely operable. What is clear from the comparison of the MRI’s is that the cancer is very aggressive and growing quickly. And it also apparently now unaffected (though maybe slowed down) by the chemotherapy she has been on since October.

Due to the location and spreading nature of the tumor area, any more surgery is too risky and would affect her quality of life. Cyberknife radiation surgery is also not an option, as we had once hoped. Apparently what shows up on an MRI is not all of the active tumor -there is an unseen active area as well - the proverbial “tip of the iceberg.” About a quarter of her brain would have to be radiated to affect the tumor, a very risky and life-threatening option.

So her neuro-oncologist is switching her to a new phase of treatment. She will be taking two drugs - one is a chemo drug called Cytoxan and the other is a cell-growth inhibitor called Tarceva. The drugs are in pill form and she will likely be on an every other week schedule of taking them. In two months from starting the chemotherapy on June 1 Sandy will have an MRI on August 1 to see how well these drugs are working. Because Sandy is doing well and is in otherwise good health, her oncologist does not want to damage her health with the more toxic and ravaging chemo drugs at this point. It’s about quality of life - something that is very important to Sandy and I.

Her pain and other symptoms are being kept in check, more or less, with
medicines. She has a very small loss of part of her peripheral vision
on the left side, which may be permanent due to where the surgery was,
or possibly a result of swelling in the brain (which is normal after
surgery and she is on medication to reduce potential swelling). This
small amount of vision loss is in the lower left quadrant of her vision. Her brain and body are of course still in some shock, but she is improving each day.

Sandy does not want a pity party and people to feel bad for us. We do not know how this journey is going to go…

“Happiness leads none of us by the same route.”

So she is going to continue to LIVE with a brain tumor and FIGHT this brain tumor. Believe in that. And in case you didn’t read yesterday’s post… All of you have meant so much to us, and after we arrive home we will
need your continued support. Please know that nothing you say (or
haven’t said), nothing you ask (or haven’t asked), and nothing you do
(or haven’t done) will offend us. We realize how difficult this journey
is for all of you as well, but we hope that by continuing to share this
it will help us all. We want your visits. And your emails and calls.
And your prayers. If we’re not up to talking, we’ll let you know. This
journey does not have a quick finish line. It has it’s ups and downs,
just like the Tour de France. We believe that hope, faith, love,
courage, and a dash of humor will keep us on this path. Please continue
to join us - you mean everything to us.

We wanted to offer the following from the Lance Armstrong Foundation. Sandy and I have been inspired by and supported Lance in his battle against cancer - his own and everyone else’s. We have worn the yellow wristbands for two years now… ever reminding us to LiveStrong.

The Manifesto of the Lance Armstrong Foundation

We believe in life.
Your life.

We believe in living every minute of it with every ounce of your being.

And that you must not let cancer take control of it.

We believe in energy: channeled and fierce.

We believe in focus: getting smart and living strong.

Unity is strength. Knowledge is power. Attitude is everything.

This is the Lance Armstrong Foundation.

We kick in the moment you’re diagnosed.

We help you accept the tears. Acknowledge the rage.

We believe in your right to live without pain.

We believe in information. Not pity.

And in straight, open talk about cancer.

With husbands, wives and partners. With kids, friends and neighbors.
And the people you live with, work with, cry and laugh with.

This is no time to pull punches.

You’re in the fight of your life.

We’re about the hard stuff.

Like finding the nerve to ask for a second opinion.

And a third, or a fourth, if that’s what it takes.

We’re about getting smart about clinical trials.

And if it comes to it, being in control of how your life ends.

It’s your life. You will have it your way.

We’re about the practical stuff.

Planning for surviving. Banking your sperm. Preserving your fertility.
Organizing your finances.
Dealing with hospitals, specialists,
insurance companies and employers.

It’s knowing your rights.

It’s your life.

Take no prisoners.

We’re about the fight.

We’re your champion on Capitol Hill.
Your advocate with the healthcare system. Your sponsor in the research labs.

And we know the fight never ends.

Cancer may leave your body, but it never leaves your life.

This is the Lance Armstrong Foundation.

Founded and inspired by one of the toughest cancer survivors on the planet.

LIVESTRONG

Sandy and I are looking forward to getting home about Thursday (May 25th) this week. I should be able to check blog comments and emails as we go. And we also look forward to seeing our son Cameron (and having our friends who have not met him get the chance to) - he has been going to college in Hawaii and will be coming home for a long visit sometime in June. We also look forward to having some good times with friends and family soon - walks, hiking the ridge trail, evenings around our campfire, dancing to some live blues bands, and of course, another garden party with the Gnome as guest of honor!

All our Love and Thanks,

Dan and Sandy


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