10. Genetic Testing, not necessarily for faint of heart...
So because I am a Cancer Unicorn (AKA one who has simultaneous cancers) it seemed only logical that I undergo genetic testing to see if, in addition to having lobular breast cancer and thyroid cancer, if I carry any of the DNA mutations for other female cancers like BRCA1 or BRCA2.
No biggie, right? Another blood test. I told Collin he didn't even have to come.
Yeah...wrong move. Prior to my appointment, I received the pre-checkin paperwork that asked for a pretty detailed family medical history. Right then, I should have realized why they don't just call it "genetic blood test" for a reason.
And it was not lost on me, as I began to fill out that paperwork, that when it comes to my "immediate" family line, the only person who is still alive is my 90 year old Grandmother, Jean. Luckily my mom had always been very open about all things regarding her side of the family, so I had a pretty good idea as to the history of both blood cancers from my grandfather's side and ovarian and breast cancer from my grandmother's side.
My dad's side, however, is a bit of a medical mystery. My grandparents were estranged from my grandfather's four brothers and sisters, and my grandmother was an only child. My grandmother was incredibly secretive about anything deemed "family business" inso far as when my Grandfather was in the hospital and my mother told his eldest sister (who she used to sneak us out to have lunch with) she was reprimanded for sharing "family business". Yeah, I know.
My grandfather on my dad's side had heart disease, which resulted in triple bypass in his early 60's. Not long after he was diagnosed with colon cancer which swiftly took his life. My dad and his younger brother also contended with heart disease which took both their lives within three months of each other last year. My grandmother died of complications of Alzheimers Disease.
Yeah, not the best track record, DNA wise.
So, with no living parents to pester with questions, I filled out the paperwork to the best of my knowledge, and headed on in. Walking into the Oncology Center at UCLA, was a reality punch to the gut. Looking around at all the other sick patients, I was ripped from the lovely rose colored, half-denial I had been living in. It's one thing to talk Cancer and go in for appointments in pretty offices with lovely doctors, but walking into the oncology wing of a hospital is a thing you can't shake.
I remember watching my mother's face the first time we walked into the Oncology Department of Sloan Kettering, seeing the hairless patients replete with surgical masks, hunched over in wheelchairs. My view at UCLA wasn't much prettier. But it never when contemplating your own mortality.
I was called in and lead back to the office of RS , one of the genetic counselors. It seemed odd to me that there didn't seem to be any medical equipment around; just a normal office like any other.
"I'm here to explain what we are testing for, and to see how you're taking everything so far."
Oh! I think to myself, this is a LEGIT "counseling " session. Like therapy.
" So because you have been diagnosed with two cancers our purpose here is to check for any DNA markers that will indicate whether you have a higher likelihood for Ovarian and Uterine cancer. Also you've gone through A LOT in the last couple months, how are you feeling ?"
"Well first off, I can say that my actual therapy sessions have been incredibly productive" I said, " And as far as dealing with all of this, I'm okay. Despite the crappy timing I keep remembering how lucky I am. There are so many people who don't have good health insurance, who this diagnoses would bankrupt. Even if it were me a couple of years ago, instead of only having to worry about getting better I would be freaking out about the cost or honestly I wouldn't be freaking out about the cost I'd just be kicking it down the road before I got diagnosed knowing it wasn't covered, and then it would be much worse. "
RS looked at me somewhat surprised. "You seem to be handling this very well."
"Thanks," I said laughing.. "I think possibly it's because I'm really good at compartmentalizing. And because I did all the super dark thinking when I was going in for my thyroid surgery. And I came to the conclusion that if it IS my time, which I don't believe it is, that I have pretty much lived by my rules. I haven't done everything I wanted to do, but I wouldn't be on my death bed regretting never doing the things I was meant to do. Also I know it makes me sound weird , but it also makes me feel better to know if I were to die that my mom and dad wouldn't have to live through the loss of a child. I don't know if other people do that, but when stuff like this comes upI need to walk down all the eventualities cause it gives me a little more sense of control"
"I get that, and what about your husband? How's he doing with all of this?"
"He's okay. He's a lot like me in dealing with stuff like this. I have told him maybe he should see someone or something, because being the caregiver is stressful too. And beer can't solve all your problems."
There were so many parellells when my mom got sick. As the caregiver, or advocate you tend to suppress the all the emotions because "You're not the one with cancer" and as a result it tends to leak out in other places. When my mom came to NYC to be treated at Memorial Sloan Kettering, I was self designated medical advocate, I made myself an expert in her disease because I needed feel like I was doing something. I fully believe that for people, women especially, its easier to go through something yourself than having to be the person watching someone go through it.
RS asked a couple more questions and finally got down to brass tacks about why there is counseling for getting the DNA results. First off if I did have BRAC 1 or 2, then we needed to talk about how that affects my decision to have children if I was still wanting to try, as well as how a positive result may signal having preventative surgery of my ovaries. She said they would send my blood for two rounds of tests first, looking for the 15 most common markers. And if I didn't test positive for any, they'd follow up with another 84 less common ones, and would test for the likelihood of colon cancer as well.
And at the end of it all, an RN finally drew my blood.
So now I get to sit and wonder, is there even more cancer in my future?
I wonder what the record is?