Thursday, January 18, 2007

Hold on for one more day

(No, this title isn't about those who have patiently waited for this very tardy update!)

I'm still here, despite the long stretch between posts. I'm past the thirteen month mark, and if I can manage to stay off icy roads, maybe I'll pass fourteen. Hitting the one-year milestone was a big deal, but I keep remembering the Temodar study, which gave hope for a fourteen-month survival rate. This study was touted as a significant improvement in patient survival. So even when I passed my anniversary I still had February 12 sitting in the back of my mind, like a little expiration date stamped on my head. I think I'll feel some relief after that date (I promise not to turn sour), and I think I'll really start feeling like I'm living on borrowed time. (Of course, who isn't living on borrowed time every day?)

After having a few conversations with some doctors about this, the Wilson Phillips song, "Hold On" has been playing in my head (yeah, add it to the blog soundtrack); especially the part that goes:

Don't you know things can change
Things'll go your way
If you hold on for one more day

As I've said in earlier posts, the bummer about cancer is that you're never really "done" until you're dead. Even during remission, the threat of recurrence still hangs around. But there is a point (even with glioblastoma) at which the prognosis gets a lot better. If I can hold on like I have been until my second anniversary, the likelihood of being a long-term survivor gets dramatically better.

Granted, "long-term survivor" for glioblastoma multiforme is defined as someone still alive three years post-diagnosis, but "long-term" is relative, since only about 2% of the patient population gets there. Fortunately, studies show that these lucky few are often young and high-functioning at diagnosis, with treatment similar to mine (complete surgical resection with adjuvent chemotherapy). And if I keep holding on with the continued quality of life that I have enjoyed, my chances might get better and better. (Just gotta be that Little Engine that Could: "I think I can...I think I can...") And of course, I'm sure the studies have not figured in the prayer factor, which I consider to be the biggest reason I'm still around and able to sing, write, and play a mean game of Scrabble. (BIG thanks to those who continue to keep me in their prayers!!!)

There was an interesting article published in Japan in 1998, about a man who lived 6.5 years after his surgery and diagnosis of glioblastoma multiforme. He was treated after surgery with radiation and chemotherapy. He died of accidental head trauma. (Maybe he didn't stay off the icy roads.) But what was fascinating about this article was that his autopsy showed no evidence of glioblastoma in his brain. All they found in his brain was damage from the trauma, along with some histological effects of radiation. It was ruled a confirmed case of histological disappearance of tumor tissue. So in this man's case, he really was "done" with cancer and didn't know it until he had died of something else. It's neat to think that although not common, it is apparently possible to get all the banana pudding out of the vanilla pudding, or all the dark crumbs out of the marble cake, or whatever analogy fits best to describe the complete capture and destruction of these nasty tumor cells.

I also had the opportunity to meet someone at the oncologist's office, who is a twelve-year survivor. He was able to go six years without treatment. It was incredible! I don't know what kind of tumor he had; his situation may not be the same as mine, and even if he has the same diagnosis there are always a lot of factors that play into patient survival (including traffic on the freeway between home and the doctor's office). But it was still exciting and encouraging to meet him. I am getting to know others who have passed their typical expiration date (and are not sour), and it gives me something to hope for. It's nice, because it makes this process a little less overwhelming, like eating the elephant one bite at a time.

And wearing my seatbelt.

I think I can...I think I can...I think I can...

Monday, January 08, 2007

I Cry the Day That I Take the Tree Down

Just in case my blog doesn't have enough songs for its soundtrack, I have to mention that another one went through my head this weekend. It's from Michael McLain's The Forgotten Carols, and it's called, "I Cry the Day That I Take the Tree Down". Part of it includes the following (if my tumor-savant skills are up to par):

I cry the day that I take the tree down;
I want the season to last all year long;
And I am dreaming of Christmases when
We'll be together again.

Saturday was our "take the tree down" day, and although that song kept playing in (what's left of) my mind, I was much more cheerful than tearful, because last year, the Christmas stuff was taken down and carefully put away by kind friends while I spent most of the day unconscious in bed. As I packed up the ornaments and nativity sets and stuff, I remembered that nice day last year, when I woke up and saw everything taken care of. And I was also happy to realize that this year, I am feeling better--not worse--than last year (and not dead), and spending another Christmas with my family again. Plus it's nice to see the look of triumph in my husband's face as he realizes that --hooray-- we are not the last ones in the neighborhood to take down our outdoor lights.

There is a natural tendency to feel a little sentimental when the tree goes down, just like it felt after the birthday parties were over, when my son's football season ended, when the Messiah performance hit its last note, when we returned from the farewell tour trips, and when I said goodbye to family and friends who live far away. I always hear the whisperings: "Is this the last time?"

It might be. It might not be. No one gets any guarantee. That's why we should savor each moment while it's here. And if there is another Christmas...another birthday...another sports season...another Messiah performance...another visit with loved ones...another three-generation Scrabble's just all the more delicious. I really thought my last Scrabble game with Mom and Grandma ended last July, but we were together and at it again during the final days of 2006. I didn't expect a Christmas season Messiah opportunity, but I got it and I seized it, and auditions for another Easter concert will be here before we know it. Registration for soccer happens this week, and it won't be long before I'm once again the crazy screaming mom in the red jersey that says "13 - Mom" on the back. (My son is lucky #13 on his team.) And I'm already aware of the fact that I haven't picked a theme for my son's next birthday event in March, which will also be here before we know it.

My tree is down, and it's time to look forward to the next celebration. Since we've become accustomed to red and green adorning the house all season, maybe I should get out the Valentine's Day roses. And meanwhile, I really am "dreaming of Christmases when we'll be together [as a family] again".

Thursday, January 04, 2007

A.D. 2

Happy New Year!

We celebrated the close of 2006 and the opening of 2007 a few days ago (and it was nice to be certain that there would be no tombstone for me that said: "1967-2006"), but I had an earlier new year's celebration, as you know from my "happy birthday" post in December.

Having finished what I call "A.D. 1" (A.D. = After Diagnosis), I am now several weeks into the year A.D. 2. Of course, I still recognize the "anno Domini" calendar, and I haven't failed a neuro test (they always check to see if I know what day it is). I'm just letting the confetti fly whenever I can find a chance. So Happy anno Domini 2007 and Happy After Diagnosis 2!

Many people come up with resolutions for the new year. Mine is easy: LIVE!

Yes, I should also organize my house, lose the "steroid & exercise ban" weight from AD 1, and pay the medical bills; because home organization, weight loss, and debt elimination are some of the most commonly made New Year's resolutions. But while those are worthy pursuits, LIVE is the one I will focus on most.

I recently heard an ad for a local university that is now offering an evening law degree program, and that perked up my ears. Ever since I was a ten-year-old devourer of Nancy Drew mysteries, and was too embarrassed to tell people that I wanted to grow up and be a detective like Nancy Drew, I started telling people that I wanted to be a lawyer. Nancy Drew's dad was a lawyer, and it seemed like a way to stay tapped into the Nancy Drew world. I could still secretly do detective work and find my own cases instead of needing a lawyer-dad to feed them to me.

I don't have a lawyer-dad (he has an MBA). I have a lawyer-mom. My mom started law school when I was a senior in high school. The following year, we were both at Brigham Young University: I as a freshman, and Mom as a second year law student. I remembered thinking "wow - and she's SO OLD", but I am now the same age she was at that time, and it feels pretty darn young. But following in Mom's footsteps was another good reason for me choose a legal education. Plus I liked to argue, so I figured it was a good way to put my best talents to work.

I was sixteen when I started my first summer term at BYU, and the presumption was that I would plow through my undergraduate studies and OF COURSE go directly to law school without missing a step. However, since I figured time was on my side, and since there was no specified pre-law curriculum back then, I wasted a lot of time being indecisive about my major. I started as a business major--a nod to my dad's MBA degree and an acknowledgement of the entrepreneurial blood coursing through my veins. Then I drifted to psychology, because - and this is eerily significant now - I was always fascinated with the brain and how it works. Then I hopped over to communications (I enjoyed my high school disc jockey days) and English (I liked to write), and then back to psychology (it still held my interest, plus I had the most credits in that major).

While I was in school Jared served a two-year church mission in Japan. When he returned, I still had most of my senior year to finish, and we wanted to marry ASAP. Since my dad planned to boycott the wedding if I didn't graduate from college first (and promised to give us a car if I did graduate from college first), we set our wedding date exactly one week after summer graduation, and I engaged in a crash program to overcome the time I wasted deciding on a major. I went to school year-round and I combined the maximum allowable on-campus credit hours with additional independent study classes, and while it got me to graduation on time, it also burned me out. I let the LSAT and law school application windows close. I was ready for a break from school once I graduated. This was a major scandal, because while my parents were relieved that I was at least getting my bachelor's degree, it was always expected that I would pursue an advanced degree. Education has always been important in our family: I have two parents with advanced degrees, one younger brother who is an M.D., one younger brother who just earned his MBA, and my youngest brother is in school. I remember trying to persuade my mom to recover from the blow of my decision: "But Mom, you went back to law school later, and so can I..." and she tried to explain how difficult that was.

She was right. I thought it would be easy to take a break, decompress, and then go to law school, but we got caught up in married life and jobs and (finally) kids. Having worked in the field of regulatory affairs, I have always known that a law degree would enhance my career (certainly a lot more than the psychology degree). It was in my plans, but finding a nearby law school (especially one with an evening program) was difficult. And then one day I participated in a mediation on behalf of a company that I worked for. After ten hours in the mediation room I emerged, battle-weary, having lost all desire to go to law school. I later became president of the company I was working for, and now I have my own consulting practice, so I have considered looking for an MBA program, especially since there many executive MBA programs out there.

However, I realized that I finally got the designation I wanted most of all: not J.D., not M.B.A., but M.O.M. For us, that effort took longer than most Ph.D. programs. And shortly after we adopted our second child, another designation (one I didn't intentionally pursue) was bestowed upon me: "cancer survivor". Graduate school left the back burner and got dumped into the sink during these seasons of joy and challenge. But I have managed to keep afloat with work and family and singing and getting a book published and receiving a very personalized medical education, so I can't complain.

As soon as I heard about the new evening law program at SMU, though, I started to wonder if this should be one of my A.D. 2 goals. Not necessarily because I want to sit in another mediation room. Not because of the Nancy Drew books that are still in the juvenile literature section of our upstairs bookshelf. Not because I want to double my billable rate for regulatory consulting. This has a Mount Everest appeal for me. Should I do it just because it's there? Just because it's something that isn't expected of someone with a cancerous brain tumor? Is it a way of defiantly challenging the slim odds of surviving long enough for a three-year degree program? Is this to be some kind of less humorous/less bubbly/less size 4 (but still "underdog-makes-it") version of Legally Blonde?

Should we really be spending $25,000/year on tuition, when out-of-pocket medical expenses can easily reach that level in six weeks? Would I be spending too much time away from my family, when time together is so precious? I know I would be a non-traditional student (which sometimes gives a competitive edge in the admissions process) but would the school really accept someone whose life expectancy isn't consistent with a future Supreme Court justice? How much studying can I do during chemo infusions? And are these valid considerations, or are they the whisperings of discouragement that always try to frustrate accomplishment?

If I surrender to my inner "GO FOR IT", I know I would be surrounded by support and encouragement. I would certainly keep my mind active and exercised, which is part of my survival strategy. It would be a worthwhile pursuit, even if I don't make it to graduation. However, if I decide to be more practical and focus on other worthwhile pursuits that make more sense for me and my family, I would still have the support and encouragement that I need. But no matter what, my goal should be the same: LIVE.

LIVE means more than just avoiding a tombstone with 1967-2007 on it. LIVE means using up every drop of life while I can. No matter what I pursue, I want learn something new. I want to magnify my talents and abilities. I want to keep challenging my mind. I want to enjoy every moment that I have with family and friends. I want to use what I have been blessed with, to bless others.

...and while I'm at it I should also strive to keep exercising every day and get the @#$! office organized and...