Oct 10, 2015
In the midst of trying to adjust to life post treatment, and
all the challenges that that entailed, it came.
The Call.
I was at work and my cell phone rang. It was a number that I
didn’t recognise, which meant likely a medical person was on the other end.
With so many appointments lately I answered and was not surprised by the “Is
this Cynthia Faas” (yup...one of my medical team…) So I was listening
with pen in hand waiting for whatever appointment I was likely going to be
reminded about.
“This is Mary Anne from the genetics clinic”.
Hmmm….I wonder if they need something more from me because I
was just there in June and its only October…they said results would be a minimum of 6
months to a year or sometimes longer …
“I’m calling to book an appointment for your results.”
Whaaaaa…? My heart stopped. Or felt like it did. Results? So
soon? Early results – this freaking early – is definitely not good.
After I came back to earth, she asked me if I would like to
come in person or get them over the phone (they had already told me this would
be my option when I met with them in June). All I could think is Phil wouldn’t
be able to get time off on such short notice and neither could I (which was not
necessarily true but it felt true in that moment)
“Over the phone will be fine.”
I felt like I was in a fog.
“Ok we have an appointment tomorrow at 1pm. Prianna will
call you then. Do you have any questions?”
Questions? My life could once again drastically change
tomorrow at 1pm…I had lots of questions. But none that she could answer.
“No”.
“Ok she’ll talk to you tomorrow. Take care and if you need
anything or have any other questions, feel free to call me”.
And with that I hung up.
I felt like I did on that fateful day when I got
the call to come in to the clinic about my results from the biopsy. The day I
was diagnosed. I really hadn’t worried about genetics. It was going to be
possibly a year or longer before I had my results. But it had only been 4
months. I was now within 24hrs of finding out if I carried a gene that would
put me at a higher risk for other cansers.
Plural.
A gene mutation that is hereditary. One that I that I might
have passed to my 2 babies. Before the crushing guilt could flood into my
heart, I somehow was able to push the whole idea of getting results from my
mind. I wasn’t getting the results today, so why worry? Maybe it was denial. I
didn’t think 24hrs of denial was unhealthy in this case. My Inner Ninja was
awake and ready to rumble, but there wasn’t any info yet so if I allowed myself
to go into full battle mode, I’d just end up scaring myself. If my life was
once again going to change tomorrow, I wanted to enjoy the reality of life as I
knew it now for just a little longer. We have faced everything head on but I
just couldn’t go there yet.
And so I put “genetics” in a locked box in the corner of my
mind, and hid the key.
I think my family were bracing themselves. There wasn’t any
“oh its probably nothing” this time. They just essentially said “well, whatever
the results we’ll deal with it like we have everything else. You’re not alone
and we will get through this together.”
Am I lucky or what? If they were worried, they didn’t say. I
felt bad though that I was putting more on their shoulders. I didn’t want them
worrying about me. I was a little scared, and I didn’t want them to be scared
too. I also didn’t want to continue to be a burden.
I actually slept well that night. But when I woke up, the
first thing on my mind was, “today I get the results”. It was a lot harder to
keep my fear in check compared to the day before. I just kept thinking “please
let it not be a mutation” As the day went on, it turned into “please if it’s
got to be a mutation, let it be BRCA2”. But even BRCA2 carried with it risks. I
felt like a mutation would mean canser was written into my very genes. It
wasn’t a comforting thought.
The closer it got to 1pm , the harder it was to concentrate.
I had an office I could use for privacy so I could conference Phil in to the
call. This was thanks to my manager and her boss – they were really great about
it all.
1pm came and went. Each minute after 1pm was excruciating.
At 1:10 I emailed my family to let them know I was still waiting for the
call…and then my phone rang. My blood ran cold. My heart rate suddenly
increased. I answered the phone then called back both Prianna the genetics
couseller and Phil. Once we were all on the phone, she got right to business.
“So the report came back and a mutation was found…”
I can honestly say this felt almost exactly like the moment
I was told I had breast canser. The world stopped turning for a second.
Everything slowed down…It felt like a physical blow. They found a mutation.
As she started to go into detail about what the mutation
was, I interrupted.
“Which one is it? BRCA1 or BRCA2?”
“Oh, sorry, yes it’s a BRCA1 mutation….”
I felt like I had been hit again. I’m glad Phil was on the
phone because I was having a hard time processing this piece of information as
she was explaining exactly what the mutation was. All that kept running through
my mind was that I had a mutation. And that it was BRCA1. The bad one…F*%k.
Looking back now, I realize I was in shock at that moment.
As she was going over the risks associated with this
mutation, she started with “so this is why we would attribute you having had
breast canser. We would recommend a bilateral mastectomy, but you have already
had one so that’s good. This mutation puts you at a 35-46% lifetime risk of
getting ovarian canser. We recommend surgery to remove the ovaries and tubes,
and can refer you to a specialist if you want more information, who can go over
screening and surgery options. The reason surgery is recommended is because the
current screening methods are not reliable. Unfortunately ovarian canser is
hard to detect due to there not haveing a lot of symptoms, and by the time
there is pain or discomfort, it usually means it has spread to other organs or
the tumour is so large it is pressing on other organs. If you decide to see the
specialist she can go over everything with you and give you the information to
make a decision.”
“How long does it take to get in and then have surgery if
that’s what I decide?”
She answered “Well it depends but I just had one woman who
saw the specialist within a month, then had surgery within a couple months of
that appointment.”
Wow. That seemed fast. My head was spinning.
And then I asked what I had been dreading to ask.
“What about pancreatic screening? My Dad died of pancreatic
canser and you mentioned when we first met that that can be linked to BRCA1
mutations. “
“Yes, you can see a Gastro Specialist to ask about
pancreatic screening. We think there is only a slightly elevated risk
associated with BRCA1 and pancreatic canser. The screening for pancreatic
canser, like that for ovarian, is also not reliable but the specialist can go
over that with you if that’s something they recommend and you want to pursue.”
“And my kids?”
“Yes, well there is a 50% chance the mutation could have
been passed onto them. It’s possible neither of them carry it. This mutation is
not like a recessive gene that can be passed on but not be expressed. Either
the children of carriers get it or they don’t. If they didn’t get the mutation,
they never will, and they can never pass it to their future children. It would
stop there. Because the canser risks associated with this mutation are
considered adult onset, (which means they are not ones that present in
childhood) the kids wouldn’t be able to get tested till they are 18 years of
age. It would be their decision if they wanted to get tested or not. Even if
they choose not to get tested, they would still be eligible for whatever
screening methods are available for high risk people. That’s a long time away,
so there could be different kinds of screening available to them by then –
maybe even better ones than now.”
I was trying to take all this in. I hadn’t cried or been
scared or felt anything really. Still in shock I guess. Then she said something
that broke through that shock barrier.
“For your daughter, if she tested and carried the gene she
would have the option of having a profolactic mastectomy…”
I don’t know how much more I heard because the tears started
pouring down my face, like a switch had suddenly been turned on. My babygirl
may have to decide if she is to have her breasts removed? All I could think of
was what a burden that would be for a young woman to have to carry. I couldn’t
stop the guilt now – it took over and one of the very rare times I thought “why
us? Why our family? Why my kids?”
I don’t honestly remember much else of that call, except
that she recommended that my mom come in to get tested, mostly to confirm the
mutation was on my Dad’s side. Then if I wished they could put a letter
together for me if I choose to reach out to his family to let them know of my
mutation and that they could all get tested if they wished.
We hung up, and in that office, all alone, I cried out my
anguish.
Not for me, but for what it could mean for my kids. For the
decisions they may need to make in future. There was no room in my grief for
hope in that moment. It suddenly felt so wretchedly unfair. All of it.
And so I cried.
Remembering I was still at work, I forced the tears to stop.
I came out with red puffy eyes to tell my boss (and friend) the news. My eyes
swam with tears when I got to the kids part. With only an hour or so left
of the day, she sent me home.
I had another cry when I got to the van.
At some point I called my parents, my sister in law and Phil’s
parents (he may have called them) But I don’t remember these conversations
though….at all.
I picked up my kids, got home, let the kids get on their
bikes and I opened a beer. Phil came home with the 2 things I needed: Guinness
and a hug. I was glad it was Friday- because I was on planet Pity Party, population 1. Tomorrow I’d wake my Inner Ninja and take on this new challenge
but tonight I was going to let myself fall apart….
As the night went on though, I kept receiving all these
texts, messages on Facebook and phone calls of encouragement and support from
my amazing teammates, friends and family near and far.
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