At dinner every night, Peter asks the boys to tell him one thing they learned in school that day. If they aren't able to come up with at least one new item, it is off to the salt mines to join the working forces as clearly they have gotten all they can from school. (This puzzles Alec a bit, since he is pretty sure that 7 year olds aren't allowed to work. Smart little bugger.)
Well, I learned something fun and new today, and let me tell you, it really threw me for a loop.
Life is always teaching us lessons, isn't it? Sometimes, they are lessons in things that we probably knew, but perhaps life felt we needed some heavy hitting reinforcement. Like, if we got shaken to our very core then we would really absorb today's homework and be ready for the quiz next Tuesday.
Today was one of those mind-blowing days. It all started with one of my regular cancer check-ups. Those times when I visit the vampires for their blood samples, get my weight announced for all to hear, and then I head back to the little room to wait for the doctor.
Back story:
I was diagnosed with Stage I breast cancer in May 2002. I had just turned 28 in April and was in my first trimester with Alec. Connor celebrated his 3rd birthday 4 days after I received my diagnosis. All in all, it wasn't a time of life that you expect to hear that you have breast cancer. Heck, 4 doctors told me I was too young, had none of the warning signs, no classic family history, and therefore couldn't have breast cancer - despite the lump on my breast.
Lots of craziness followed, which I will tell you about later. Today, that story isn't the point. The point is the why behind the cancer. I don't mean the "why me?" I never bothered much with that, understanding that my life is as apt to take an unexpected twist as much as the next person. No, I mean the scientific why. Since I was relatively young in breast cancer terms (although the rates of breast cancer in women under the age of 40 are steadily rising!), it made sense to find out whether my genetics played a role. Did I have one of the identified genetic mutations -BRCA I or BRCA II that are thought to make a person more susceptible to breast cancer?
We did the genetic screening in September that year and discovered that yes, I had BRCA II. As the geneticist explained, I had an unusual situation. Evidently, I had received one mutation from my mother, and one from my father, on this particular gene known for stirring up breast troubles. Individually the mutations were harmless, but combined they packed a punch. To this day, I can clearly recall sitting in that cramped consultation office trying to focus my mind on what she was saying. Things like, increased risk of another breast cancer. Risk of ovarian and colon cancer. Oh, and my favorite part, - increased risk of cancer in general. Great! Fantastic! I won the genetic lottery!
Whether to get genetic testing is the source of huge debate. Would you want to know that you may be a time bomb? What do you do with information that you may someday get cancer, but then again you may not?
So, why did I want to know? Easy. Connor and Alec. I wanted to do everything in my power to see that my boys had their mother for as long as possible, and to do that, I needed all the information I could get.
My desire to fight this whole cancer business with all that I had, coupled with the new insight that more might be on the way, I opted for surgical removal of my ovaries (Ha! Can't get me, if I get you first!) and a few year later, my second breast.
All of this - my original diagnosis, the discovery of the probable why with BRCA II, and my subsequent surgeries- formed my story of my cancer. Each part is fundamental to my personal understanding of how and why a significant part of the past eight years of my life happened.
The world I knew got thrown topsy turvy as I sat in the cancer doctor's office today. I never saw it coming. This appointment was unusual. I wasn't meeting with the actual doctor, but his assistant, to be introduced to a new survivorship program. She explained all about it. We talked vitamins and nutrition. All nice harmless stuff.
Then I said, "hey, did you see the new study results recommending the removal of ovaries in women with BRCA II?" And she said, "Oh, yes. But you don't have BRCA II."
Excuse me? Perhaps you have me confused with another patient. I'm the one diagnosed with Stage I BC, with BRCA II.
Nope. She was certain that she had seen a note in my file that clearly stated I did not have BRCA II.
I got a copy of that note. It is a report from the genetics lab dated 2008, in which they revised their earlier assessment of my test results and now conclude that I do not have BRCA II.
Huh. Would ya look at that? Wow. Felt a little sick to my stomach. A bit like crying. You know how people say the ground shifted under them from some big revelation? Yeah, it was a little like that.
The drive home was surreal with multiple trains of thought crashing together in my brain. On the one hand, I fully understand that science evolves. Perhaps the genetics lab has a more sophisticated test that can now exclude my results from the positive category. Who knows, in another few years, an even more super duper test could put my results back in. So, the truth of my diagnosis, like science, is fluid.
Does that matter? Does it change anything?
Having the scientific evidence for my why was rather comforting. It helped me order the events. Now I feel a bit lost. I still believe there is likely a genetic factor, and perhaps science will discover it, and I will sit in that office again one day to be told I do have BRCA II or III or IV. Who knows?
Obviously, it is a GOOD thing that I might not have BRCA II. No one wants a genetic predisposition to cancer. But, as I said, I still think it is really there, just now without a name.
What of the big questions? Would my medical decisions made over the past eight years, based in part, on the original BRCA II finding have changes? Well, in all likelihood, I wouldn't have had my ovaries removed, if only because no doctor or insurance company would have agreed without the genetic evidence. I would still have had the second breast removed. Most definitely. Whatever caused the cancer in the first breast, genetic or not, could cause it in the second, and I'm not one for waiting around for that to happen.
Going into menopause at 29 is a big deal. If this new report is right, and I don't have BRCA II, does that now make me a cautionary tale against genetic testing? Some might interpret it that way, but I have a feeling it would be those who are already against the testing.
My perspective is a little different. I chose what was at that time considered a pretty aggressive treatment based on the best information I had. I feel good about that. I did what I felt I had to do to survive, to be there for my boys. The story, the truth, may be fluid, shifting and evolving - and that is a lesson I will remember - but the fact that in each present moment we must do our absolute best with what we have at that time remains. Whatever the truth is or was or will be, I fought like a momma bear, and I would do it all over again.