I’ve lost touch with writing over the last year, and in more
recent months, I’ve realized, I’ve lost touch with who I am. A year ago, I was
at the highest point of ‘happy peak’ looking down from the top. I enjoyed every
aspect of my life, and I knew just how good I had it. I appreciated and often
pinched myself at the thought of reality. Even on the worst day, I was able to
find joy in the simplest of things. Then life started getting busy. Really
busy. But it was all happy busy. Trips, adventures, celebrations, work
promotions, the one-year mark with my man-friend. I smile just thinking back.
Things slowly started to shift from happy-busy, to
stressful-happy-busy. A change in job, more time apart from my man-friend (we
both travel for work), and health concerns all started piling up. While still
not bad, the element of extra started taking its toll. More doctors appointments,
building my self-strength when apart from my amazing support-system-boyfriend,
and learning a new job.
February 12, three days shy of my 29th birthday,
I found out I tested positive for the BRCA1 genetic mutation. I’ve been doing
research for nearly 8 months, since I was first approached about getting
tested, but hearing the confirmation broke me. I’ve watched my Mom go through
testing, ovarian removal, and now a double mastectomy for the very same reason.
All of this (both her & my testing) brought on because I have a breast
lump.
I found said lump in 2012. It started fairly small. It feels
like a hard, dense stress ball, and sits at about 7:00 in my right breast. As
odd as it sounds, I used to sit and push the lump around, wondering what it
was, but always came to the conclusion that ‘I’m too young for breast cancer’.
Until my mom caught me ‘playing’ with it - she urged me to have it checked, and
I laughed it off, saying it was no big deal. Until it started feeling slightly
tender. I finally decided to do the right thing and have it checked for peace
of mind.
When I called my OBGYN’s office, the advice nurse scheduled
my appointment, but reminded me that 9 times out of 10, a lump found at home
isn’t anything. Relieved, I didn’t give it much additional thought until I went
to the doctor. Awkwardly gown-clad, I had to be seen by a fill-in physician, as
my regular doc was on maternity leave. As a complete stranger started feeling
me up (at least she said hello and introduced herself first…), she asked the
typical questions doctors with decent beside manner do: ‘What do you do for a
living? Oh?! Do you like that? Uhm, Hm. That’s great.’ And then her face
changed and she stopped asking questions. It was obvious she wasn’t sure what
she was feeling. After she finished fondling the other side, she sat me up,
explaining that she’d like to send me out for an ultrasound.
So began my long adventure with “the lump”. (I have a
lump…it’s still weird to admit.) I was scheduled for my very first ultrasound
within days. A young ultrasound tech brought me back to a dark room and started
taking images. She lathered the boobie up, and really got in there…for a long
time…rolling over and over the same area. She didn’t say much, but left me gown
open on the table, and exited to get another tech. In comes a young man with
the woman, who then went back over the images already taken, and took some
new images himself. They mentioned they now needed to speak with the radiologist.
They left me in that cold dark room for nearly 20 minutes. I
lay on the table, tears slowly dripping out of the sides of my eyes and down my
temples, pooling into my hair. The dialogue in my head went something like
this: ‘I’m only 26. I’m too young to have cancer. But, Aunt Kelly died of
cancer at 25. How will I get through this? How is this happening to me? Man,
it’s cold in here. Can I get dressed? I wonder how long these assholes are
going to leave me in here covered in goop, topless.’
When they finally returned, they explained that something
just didn’t look quite right, and they had arranged for me to head across the
hall for a mammogram. (MAMMOGRAM? I’m only 26!) I changed into a provided robe,
and sat in a waiting room with many other women, each 40+ years my senior,
sipping tea and reading magazines featuring denture cream and erectile
dysfunction medications. Embarrassed, I text my male boss at the time that something
came up and I wouldn’t be returning to work that day.
The waiting room slowly emptied out, and after an hour of
waiting, my name was finally called. An elderly, not-so-gentle nurse brought me
back, marked “the lump” with a sticker containing a metal bead, and began
squishing my breasts into pancakes. I’ve never seen anything like that – they
are so…stretchy! I was brought back to the old-folks home to change and was
instructed to wait until called. When a new nurse finally called my name, she
took me to a small room and all she said was “The radiologist doesn’t see
anything in your scan(s) that is concerning at this time”. I tried to ask a
number of questions, (like…what IS the lump, then?), but all she could do was apologize,
and said I’d have to follow up with my doctor.
My doctor eventually called to explain that at the tissue
level, everything looked normal, and suggest we monitor it. I hung up the phone
and felt “the lump” and smiled that it was ‘nothing’ except an oddity that had
become a part of me.
Fast forward two years, and my little lump friend had
clearly increased in size. More than doubled. I called and scheduled another
appointment, and again was sent out for a new ultrasound. This time, they
compared the new scan to the previous, and again, I was told that, at the
tissue level, everything looked normal. When the doctor followed up after this
scan, she referred me to a breast surgeon, as it was time to ‘find out what the
mass is’.
I met with the first breast surgeon over the summer in 2014.
She went through my medical history, family history, and performed a breast
examination. (How many people have had hands on my lady lumps now? I’ve lost
count…). After I explained that there are a number of family members that have
had breast cancer, she asked if anyone in my family had tested positive for
BRCA1. Giving it some thought, I realized some had, and while my family knew
about those positive test results, we never thought that it meant we could have
it, too. The doctor did a needle biopsy and recommended that my mom be tested,
and if positive, insurance would then cover my testing.
My always-supportive mom agreed, and had an appointment
scheduled right away. I don’t think either one of us really thought those
results would be positive. We hadn’t processed what the outcome could be, just
that in getting tested, we would be one step closer to figuring out my mystery
lump. In the meantime, my biopsy came back as inconclusive, and I was told to
follow up in a few months.
Then, my mom got the call. She was positive, and had already
defied some pretty terrible statistics. While BRCA1 knows no age in regards to
the breast cancer risk, the risk over the general population is increased 50
percent by the age of 50. It’s increased 80 percent by the age of 70.
Essentially, mom had an 80 percent chance of getting breast cancer in the next
16 years. Each of us kids now also had/have a 50 percent chance of also testing
positive for BRCA1.
We started educating ourselves as much as possible, knowing
that BRCA1 means an extremely increased risk of developing breast cancer at any
point in life, as well as concerns of developing ovarian and pancreatic
cancers, but those are normally at a later age. It also means heightened risk of prostate cancer for
males. Mom decided to have her ovaries removed right away, and us kids started
initiating testing.
My brother is luckily negative, which means he has not
passed the mutation onto my two beautiful nieces. My sister is still waiting
for her results, and my grandfather is now also looking into testing, and to
educate himself. Mom elected for a double mastectomy, which she had in the
beginning of February, and is proudly rocking the ‘noobs’ (no boobs, as we like
to call them). With a scarf and a little pillow stuffing, you can’t even tell!
She’ll be undergoing delayed reconstruction once she is fully healed. Her
diabetes did not make her a candidate to have everything done at once. I am so,
incredibly proud of her for making this choice, even though she is scared and
doesn’t feel brave. She has taken control of her diabetes, is improving her
health, and she’ll have some brand new bolt-ons before she knows it!
Meanwhile, my possible diagnoses, and then official results
spurred many, MANY conversations regarding family planning and the future. I’ve
found every doctor has a different opinion. My mom’s geneticist was of the
opinion that I could wait until I was 35 and/or done have children to have my
ovaries and breasts removed. There is great screening for breast cancer, so I
could also choose to just be monitored every 6 months. The ovaries, however,
they have not developed good screening for just yet.
When my test results came in, I went to meet again with the
surgeon who performed my biopsy. My office experience was less than stellar, as
the doctor was more than an hour behind schedule, she clearly hadn’t read my
chart and did not remember who I was, or that I had tested positive for BRCA1.
It was like pulling teeth to get her to tell me what her professional opinion
for next steps was. When she told me that I should seriously consider having a
mastectomy, and that my ovaries could wait until I was done having children, I
expressed concern with not being able to breast feed. Her response of ‘having
breast fed children myself, it’s not that great and it hurts’ and explaining
that if that was my only set back, I should consider doing it sooner rather
than later, made me lose all faith in her. She ordered an MRI, which I scheduled
and decided that, in the meantime, I would find another surgeon to take my MRI
results to.
The family planning conversations have been the hardest.
While I am in a great relationship, and we have discussed marriage and
children, we are not engaged, nor expecting. The diagnosis and constant
questioning from doctors of ‘Are you married?’ and ‘Do you want kids?’, while
with good intent, imply that I am a ticking clock. I’m already asked almost daily
by friends when I will be getting engaged (as if that’s within my control…) and
every-single-time I log onto facebook, another friend is announcing their
engagement or upcoming birth of a new sweet babe. I am so, so thrilled for all
the good news for family, friends, and loved ones, but I can’t help but be
reminded of the ticking and my situation whenever I see it. It’s enough to make
one go crazy, and I just have to continue to remind myself that my turn will
come when it’s meant to. Easier said than done.
With so much swirling in my brain, I have been less than fun
to be around. It’s not that I am unhappy, it’s that reality of my situation has
turned me into a realist more than ever, and that can be perceived as negative
at times. And, I am also extra stressed…oh, and I don’t handle stress all that
well… I’ve felt as if I am barely treading water, and I am struggling just to
keep my head up to breathe. I’ve become forgetful, distant, and sad at times.
I’ve suffered migraines, stomach problems, sinus infections, and overall been
more ill than I have in years. I haven’t been reacting normally to so many
situations. I’ll get upset over the silliest things, I’ll cry at inappropriate
times, and I get really angry way too easily. Last night, Brad finally
approached the situation with me, and I am so, so thankful he did.
He’s worried about me. Something I have been for myself for
so many months and haven’t been able to admit. Something I have never truly had
in a partner – thoughtfulness of MY feeling. He couldn’t remember the last time
I came home and exclaimed ‘I had a great day!’. How sad a thought to know I
have used him as my sounding board to come home to and explain my daily
frustrations? I have felt broken, and whether it be work frustration, traffic,
or another doctors appointment/health challenges, he hears it all. I am someone
who finds healing in talking and writing, and I am realizing maybe I have asked
for too much of him. While I know he is there for me, through good and bad, the
negative has been building too long, and who wants to be around someone who is
habitually sad? He loves me enough to say ‘I’m worried, I’m here for you, and
what do you need?’. I feel so, so lucky to have him. He makes me want to be a
better person, not only for him, but for myself. He challenges me, believes in
me, and loves me truly. He is exactly the man every parent hopes their daughter
will find, and him opening my eyes last night was a huge reminder of just how
good I have it – and that with him by my side, I will get through all of the
challenges I am about to face.
This morning, Brad went with me to meet a new surgeon. She
is a breast specialist, and her bedside manner was exactly what I was looking
for. I had already decided I would be having a mastectomy and my ovaries taken
out after I was done having children, but the still uncertain explanation for
“the lump” has been nagging me daily for the last 6 months, since my
inconclusive needle biopsy. I had an MRI last Thursday (after taking the red eye
home from our amazing Hawaiian vacation) and this morning, I got the results.
The doctor came in, completely educated on my file,
introduced herself, and began discussing my options. She did not try to sway me
one way or another, she just explained that there are screening options, and
there are removal options. There is no way to pinpoint at what age my ‘bad
genes’ could mutate, so the screening is thorough (MRI and mammogram every 6-12
months). I expressed my concern with wanting to breastfeed children one day,
and she explained that she will support whatever I want, but wanted me to know
that with pregnancy comes hormone changes, and increased risk of the breast
tissue changing all throughout a pregnancy and breast feeding. In other words,
pregnancy increases my risk in addition to having BRCA1. There are patients
with BRCA1 who choose to wait so they can breastfeed, and develop cancer while
pregnant, and then have to begin chemo…while pregnant. I can’t imagine the
stress that would put on someone.
She explained that my MRI had pinged something on my left
breast that they now want to do a follow up ultrasound on. My lump on the right
side hadn’t shown anything of concern. With the knowledge of additional
increased cancer risk while pregnant, as well as now needing additional testing
post-MRI, I made a decision today. I want the peace of mind that removal will
bring. I don’t want to be tested every 6 months, just to wonder each time a
follow up is needed, if this will be the time it’s caught. I believe that the
best mother I can be for my future children is a healthy one, who doesn’t have
to go through the toxins of chemo, even if that means *gasp* I have to bottle
feed. I understand that I am not defying death, but rather, being proactive about my medical treatment. I'd rather opt for a surgery now when I am healthy, young, and able, than find out at a young age that I have cancer and have to go through chemo, or find out later in life when my health might not be as suitable for recovery from something like this. My 80 to 90 some-odd-percent chance of getting breast cancer at an
unknown point in life will drop down into the single digits. Those are numbers
I like.
I still have a long year ahead – meeting with a plastic
surgeon, a follow up ultrasound, deciding on a reconstruction route, picking a
timeline, getting through a deployment…but I am finally ready to face it all
head on. I am not a ‘woah-is-me’ person. I don’t believe the powers that be
give any one person more than they can handle. I have been selected for a
reason, so the best I can do, right now, is share my story, and tell you to FEEL
YOURSELF UP! Squish them, squeeze them, twist them, jiggle them. Do what you’ve
got to do to be proactive about your health.
Brad noticed my iphone6 screen was cracked today while
waiting for the appointment, and I also recently got a chip in the windshield
of my jeep. Then, as I sat down to write tonight, I realized my computer chair
is broken. I’ve been joking that I am broken, and everything around me is
breaking, and while that might be true, it took a heartfelt conversation with him
last night to make me realize that all that is broken can be fixed. One of my
favorite things he often says is (pardon my French…) ‘All is NOT fucked’. And
he is so, so right.
Our adventure continues...
