Monday, February 06, 2006

Prognosis Schmognosis - I'm a Snowflake

12-14 months statistical prognosis. It hangs over my head all the time. Like a big cartoon piano waiting to drop on me.

Once in a while I come across an article about some possible new treatment for brain tumors. While hopeful, the article often peppers the story with background information about the quick devastation that is caused by glioblastoma multiforme, and how hard it is to treat. One recent article that I read commented about how so many patients have their fatal recurrence within 9 months. It makes my stomach turn. I've seen the statistics that show such a tiny minority of patients living more than two years, and the five year survival rate at virtually zero. Over and over again. It gets pretty gloomy, so I try not to focus too much on it.

Instead, I try to focus on the favorable conditions that I have mentioned in an earlier post. My age. The location of the tumor. The easy recovery from neurosurgery. The complete resection of the tumor and the placement of the Gliadel wafer. Added to that, I think, is my ability to tolerate the treatments as well as I have so far. And, of course, the many, many prayers. I have been told that I have a lot of the characteristics of "the rare ones" who beat their prognosis (even for a little while).

I was chatting on the phone with my brother (the one who is the dermatology resident, and who has all the makings of a superior physician), and we were talking about how the establishment of a prognosis can be so flawed, because there are so many variables at play. For example, I have a grandfather who died from melanoma cancer. He was originally given six months to live, and he survived seven years. (I hope I have A LOT of his genes!) Of course, what killed him is when the cancer finally spread to his...(shudder)...brain. But hey - seven years! From a six-month prognosis!

I commented to my brother that, yes, well, the whole prognosis thing is flawed, but the doctors are basically working off of historical data and experience. My brother gave the most profound reply:

"Yes, but they have NEVER seen a glioblastoma multiforme in a Krista Oakes before."

This was a really great point. No one has a DNA structure exactly like mine. No one has a health profile exactly like mine. No one has every variable that I bring to this situation. No one has responded to surgery and treatments exactly the same way that I have. No one has taken all of the medications that I have taken throughout my life. No one has a lifestyle exactly like mine (food, exercise, sleep, stress management, etc.). No one has the same total drug regimen (other than maybe the chemotherapy drugs). I could go on and on. Everyone is different. I'm a cancerous little snowflake!

In addition, and possibly more importantly, no one has my unique destiny. I have an individual spirit, and was put on this earth for a specific purpose. We all are that way. I have a time to be born, and a time to die. I have a specific work to do here. No one will ever be my children's mother the way that I am. No one will be my husband's wife the way that I am (even if I die and he remarries). No one will ever be my parents' daughter; my brothers' sister, etc., in the way that I am. No one has my mix of talents and abilities. (Not that mine are superior in any way - just that they are unique to me.) No one talks or writes about things exactly the way I do. (Again, not that my way is better. It's just me.) We are all snowflakes of sorts. Individual, special creations. Sometimes each one of us is uniquely able to touch someone's life as we cross paths. We each have our own destiny and purpose and plan.

There is the doctor's time - the statistically derived time - and then there is the Lord's time. The former is a reasonable but flawed guess, based on history compiled from a group of people who are all different. The latter is based on an intimate knowledge of who I am and what I should be doing here to achieve my highest potential.

Meanwhile, I remind myself that NO ONE gets a guarantee of 14 more days, much less 14 months. I might not even die from this cancer. A Mack truck might beat it to the punch! Each day of our lives is a gift that we should receive with gratitude.

Just the same, I am preparing myself JUST IN CASE that 12-14 month number ends up being accurate for me. It is a gift to be able to prepare some things that are important to me ("If ye are prepared ye shall not fear") and to show my gratitude for life by making as much use of it while I can. But I am also holding out hope that our prayers for healing and an extension of life will be answered with a miracle. And meanwhile, I am just so thankful for each day. I am thankful each time I put on my shoes and dance with my husband. Each time I sing. Each time I hug my family members. Each time I do a puzzle with my son. Each time I think about something to add to my blog. And so on...


Anonymous said...

You are miraculous! You are an inspiration and I think of you and your family often. Your grace, dignity and sense of humor have given me perspective. Thank you for sharing your precious time and life.

Anonymous said...

It's amazing how the Lord can help you through someone else's life living experiences...even on internet! I was recently introduced to your blog through my sister who is also addicted to your life story. I am LDS, was also raised in P.G. Utah :)...have also been experiencing difficulty for 4 years with pregnancy...the little rugrats still aren't here. You inspire me to keep my hopes up and alive!!!! I think of you often and keep you in my prayers!

krista said...

I just love your attitude. And your style of writing. And the way you inspire us all. I have never seen you (would love it if you did post a picture of you and your family) so I can visualize you while I pray for your miracle!

Jeffrey Ogden said...

Hello again Krista, It is amazing how you echo the same feelings I towards my battle with this. Yes, each pearson has to go down thier own road, and if that road ends soon, then I am greatful for the oportunity to have told everybody how much I love them. Ther is a little twist on words (piece/peace) that I made up which I think expresses my battle, "The tumor may have taken a piece of my mind, but it has not taken my peace of mind!"

Kari said...

You are a total INSPIRATION!! Thanks for sharing your life with me. It buoys me up in my troubles and helps me put them in perspective!!