Wednesday, May 21, 2008

So now the ME spin gets out there!

CNN has invited brain tumor survivors to share their stories online. (Wow -- never thought of doing that before!)

Here's mine:

Tuesday, May 20, 2008

One More Tu-mor

As soon as I heard the news last week that Senator Ted Kennedy was hospitalized for a seizure, I wondered if he might have a brain tumor. (Seizures were my presenting symptom, too.) And sure enough, today's news about Senator Kennedy's malignant tumor has been flooding the airwaves (even drowning out the primary election going on today, which is the only good thing about this happening).

Our local Fox news station has some video of Dr. Fink (my miracle-working neuro-oncologist) as she discusses the location of the tumor:

I liked Dr. Fink's approach because it is straightforward instead of trying to go for the sensationally devastating.

It's so interesting to see how other news coverage portays things to hype up the negative. Although the specific pathology has not been released yet, it seems like every article I read jumps right to the possibility of glioblastoma. (The kind of tumor that I have.)

I kept reading descriptions about how vile and aggressive glioblastoma is. Things like:

"Average survival can range from less than a year for very advanced and aggressive types — such as glioblastomas..." (MSNBC)

"A glioblastoma is the most common brain tumor that affects adults. It is also the most rapidly growing, malignant tumor of the brain with the shortest survival. Death may occur within months. 'It’s the most malignant, the most aggressive, the tumor of the brain associated with the shortest survival,' said Marc Chamberlain, a professor of neurology and director of the Brain Tumor Program at University of Washington, Fred Hutchinson Cancer Research Center and the Seattle Cancer Care Alliance." (Fox News)

"Average survival can range from three to five years for moderately severe malignant gliomas to less than a year for very advanced and aggressive types such as glioblastomas." (CNN)

There is a different spin, however:

"Glioblastoma is pretty darn serious, and needs a lot of medical attention and prayer. It's like a sixteen-year-old getting their first driver's license. A year later some might be dead, while some might be working on their next karate belt and hoping for another shot at a Messiah solo. There are wonderful treatments that work to preserve both life and quality of life, and we should support the research that brings us these treatments (and hopefully a cure someday). Average side effects of glioblastoma include increased perspective, diminished pettiness, and a swelling of faith." (ME)

Just to clear the air, I am a staunch Texas conservative and superfan of Rush Limbaugh and Glenn Beck. When it comes to politics, Senator Kennedy and I are diametrically opposed. But we are both children of the same God, and now we are both survivors with something serious on (what's left of) our minds. I wish him all the best, and pray that he and his family will have all that they need right now. I am sure many are praying for him, and I hope he feels the strengthening support of those prayers, as I have felt.

Saturday, May 17, 2008

Livestrong Day?

I guess Livestrong Day is like Easter. It may fall on a different date each year.

In the past it has fallen on May 17th, and I just noticed that the Lance Armstrong Foundation celebrated it on May 13th this year.

I've mentioned it before, but May 17th has personal significance. May 17th this year marks a quarter century from the first time I kissed my future husband. It was our third date, and Prince Jared planted his first smooch on me at my doorstep. We were friends for a long time before that, and I had been mooning after him for about six months. I guess he finally decided to be in love with me, too. And it's just gotten better ever since.

So whether or not this is Lance Armstrong's official Livestrong Day, it's kind of mine in a way. I'm lucky to have gotten many more smooches than originally predicted in December 2005.

Monday, May 12, 2008

...and...TWENTY NINE!

Wow -- twenty-nine months!

I'm at that really really short point on the statistical curve as it (hopefully) flattens out for a while. If I go seven more months like this I might reach "long term survivor" status. When I was first diagnosed I thought I'd be really lucky to survive to a point that is now fifteen months back in the distance.

Once in a while something changes in my schedule for the day, and I end up with "found time." I always like to keep things in mind that I can do with those pockets of extra time on my hands -- no matter how small those pockets are.

And here I am with a whole lot of "found time" behind me (and every minute adds to it). I've started taking an inventory of what I have done with that time so far, and what I should be doing. If I had known in December 2005 that I would still be alive and kicking today (literally -- just ask my sensei), would I have done more with this time? Would I have been a lazy bum and done less? Who knows?

Gotta do what we can, while we can. Right now I can drive myself nuts thinking about what to do next with all this "found time".

I prayed a whole lot for this life, and I'm sure that I should give an accounting for what I have done with what I have been given. I feel like one of the servants in the parable of the talents. Whether I get a little bit or a lot doesn't matter as much as what I choose to do with it.

Some things are easy, like hugging my kids and telling my family members how much I love them. We always want one more chance to do that, and I've been blessed with many chances.

Other things are harder and require me to cut out a little circle and write "T U I T T" on it. (Because I'll finally do it when I get "a round TUITT.")

I'll get the scissors and start cutting circles. After all, if I want to try and stretch this out to twenty-nine years, I need to be filling it with a lot of good stuff!

Wednesday, May 07, 2008

Gonna Whip Cancer

Those who read my blog know that I have a multi-faceted approach to my survival strategy. Those facets include

faith & prayer
friends (especially those who add their own faith and prayers)
staying active (in church, at work, and in karate class)
good music
good food
good laughs
and on and on...

Another contributor is my good care; particularly my neuro-oncologist, Dr. Karen Fink. She not only knows the gold standard of care for GBM, but when my tumor became too aggressive for that she had a lot of tricks up her sleeve. Her involvement in research is saving lives, including mine.

I don't know how she does it, because medical insurance does not cover experimental treatments like the ones that worked so well for me. The fact that I was using up over half a million dollars in uncovered chemotherapy never worked its way into our conversations, as she seemed so intently focused on the good results. (And I'm not the only patient in this situation!) Half a million dollars is nothing compared to the value of living days and even years longer than I thought possible. I could never repay what has been done for me. And yet someone has to at least keep funding alive for this life-saving research.

This has been on (what's left of) my mind as I think about how grateful I am for how well things are going. Also on my mind is my friend and fellow Longflicks rocker who is surviving breast cancer that has recently metastasized to her brain. (I had to tease her about quitting trying to compete.)

And it so happens that I have another friend who is a Pampered Chef consultant, AND it so happens that they do fundraisers, AND it so happens that they also have a special "Let's Whip Cancer" program going on this month. I had to jump on this for two reasons:

1. If I host a fundraiser I can have all of the fundraising proceeds go directly to Dr. Fink's research fund. This is one small way to say "thank you" to Dr. Fink.

2. In addition, during the month of May there are some special "Help Whip Cancer" products being offered, and $1 from each one purchased helps support the American Cancer Society's breast cancer education and early detection programs. This is a great way to pay tribute to my survivor friend.

I was a Pampered Chef myself years ago (before my son was born) and I love-love-love their products. I still use my stoneware and cookware and gadgets, and my husband still loves his grilling tools. And their Pantry seasonings are great, too (all natural/no MSG/very yummy). And the cookbooks are awesome, and so on...

I'll end this commercial with a link to a secure website, where you can view and purchase items for this fundraiser online:

Remember -- anything purchased from this link will make a contribution to Dr. Fink's cancer research fund. In addition, any of the specially designated "let's whip cancer" products will also contribute to the American Cancer Society's breast cancer programs.

I hope everyone will enjoy helping me whip cancer in a yummy new way!

Tuesday, May 06, 2008

I have ten weeks left...

...until my next MRI! (I had one today!)

There was an abnormality on today's MRI...
...if you consider it abnormal to have things look so good this far out, with no treatment during the past two months! (I wouldn't call it an abnormality -- I'd call it a miracle!)

There is no progress to report...
...and that's good news in cancer world!

So I go into the hospital on Thursday for an overnight stay... escort my son, who is having his tonsils and adenoids removed!

Gotta run...
...from the angry mob of readers! (You prayed for me and I reward you with sick humor!)