Story and Photos by Emily Clark
The Path that
Lead Her Here
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| Lily Webb in the Leeds, Utah cemetery |
Lily
Webb walks thoughtfully down the Juniper lined pathway in search of her aunt
and grandparents. A cool breeze, that is in stark contrast to the blazing sun,
swirls around her in the cemetery in Leeds, Utah, guiding her forward.
Her
four-year-old daughter, Lois, runs excitedly ahead of her as Lily looks to the right
and then the left.
“I
could’ve sworn they were over here,” she says as she continues her search. “Let’s try the other side.”
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| Lily Webb searches for the graves of her grandparents and aunt. |
Another
few minutes of searching yields the discovery of their graves. Lily kneels and
reminisces.
“Oh,
Grandpa,” she says in a heartfelt whisper as she reaches forward to touch an
engraving in his headstone. It reads: He tried.
 |
| Lily Webb with daughter, Lois Schoenhals, at Lily's grandfather's, Lavarr Beames, grave. |
“You
did, Grandpa,” she says out loud as her daughter crawls into her lap. “You
did great.”
A
moment passes in silence before she speaks again. “I was holding him when he
died,” she continues. “He died of cancer. It’s ironic, because he didn’t
die of the BRCA2. My grandma died of BRCA2, as did two of my aunts.”
She
wraps her arms around her daughter, rests her chin on the little girls shoulder
and becomes pensive.
Lily
has BRCA2 gene mutation, along with 30 of her 40 cousins that have so far been
tested for it, but unlike her grandmother and her aunts she’ll survive, and
it’s all because of the discovery of the BRCA2 gene mutation.
Discovering BRCA
2
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| Lily Webb waits to see one of her Mastectomy Surgeons, Dr. Rosenthall |
BRCA2
is a genetic mutation that is hereditary, and can be passed down on both the mother and the father's sides, and makes the possibility of getting
cancer at a very young age an inevitability. It can cause many different kinds
of cancer, but for women it typically causes breast and ovarian cancers.
The
gene mutation is very rare and because of this almost unheard of. So how then
does a family like the Webb’s come to discover its existence?
“Two
of my cousins were up at Huntsman Cancer Institute being treated for breast
cancer,” Lily says, pushing a lock of her hair behind her
ear. “They found each other in the hall one day and were talking. That’s when
the doctors discovered they were cousins. They told them immediately how
strange it was that they both had cancer. Wheels were set into motion, my
family was flown in from all over the world and the testing for the BRCA2 Gene
Mutation began.”
It
never seemed strange to Lily or her family that so many of them were getting
cancer.
“We
grew up knowing that we would die of cancer. It was an inevitability that we
had all come to terms with. Everything’s different
now, we aren’t destined to die.”
Cheating Death
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| Lily speaks with Dr. Rosenthall about her upcoming Double Mastectomy. |
Lily
quickly decided to take every preventative measure available,
 |
| Questions asked of patients deciding on surgery. |
including a
double mastectomy and hysterectomy, in effect pioneering the way for her
cousins who are still struggling with what they should do.
“I
[...] know that I have done what I can to be with my young daughter for longer,
(Webbmakingthebreastofit.blogspot.com, A Bit Extreme? Yes.).”
“Having
a hysterectomy now could cause other serious complications,” Webb explains. “My
doctors won’t let me have that surgery until I’m 35.”
Despite
not having to worry about a hysterectomy at present, she still had her
mastectomy nearing and regardless of her frequent doctor’s appointments, life
continued.
Work Family
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| Lily talks about her new benefits plan with fellow co-workers Jake Walton and Julie Pizza |
One
day at work Lily sat at her desk looking over her potential medical expenses for
the double mastectomy and felt, once again, the relief that came from working
at Nelson Laboratories.
Having
a double mastectomy and reconstruction requires two separate surgeries and at
least six months of total recovery time. Her work colleagues, including her direct
boss, and the CEO of Nelson Laboratories have assured her that they will help
in any way they can, including holding her position for her during her
recovery, allowing her part time disability so she can work from home, and have
even offered to help her pay for her surgeries if the insurance decided they
would not pay for them.
“Insurance
not paying was a real possibility given that I didn’t have cancer yet and that
my surgeries were just preventative. So it was extremely relieving to know that
I wouldn’t be buried in medical expenses for the rest of my life.”
Her
last day at work, before her first surgery, was a particularly emotional day.
“I
asked my boss if I should clear off my desk and she panicked and asked me if I
wasn’t planning on coming back,” Lily recounts with a smile. “They threw me a
going temporarily away party and my teammates and boss surprised me by donating
forty hours of their PTO, (Paid Time Off,) that was then matched by the
company.”
On The Move
Part
of the stress of having a double mastectomy came when Lily realized that she
would have to move. Being every bit the proactive protagonist she immediately
began the process by putting almost everything she owned into a personal storage
unit so she could prepare to move back in with her parents.
“My
parents have been so great through all of this. They let me move back in, my
dad came up to Salt Lake to help me move and my mom is going to help take care
of me and Lois while I’m recovering."
 |
| Lily and her father, David Webb, move her bed out of her Midvale, Utah town home and down to Springville, Utah. |
It’s
never easy being a single working mom as any single working mom would attest
to, but adding the stress of a double mastectomy on top of that is one that she
knows she wouldn’t have been able to handle alone.
“My
mom had planned on coming and staying with me in my new apartment after
surgery, but in the end it just made more sense to move back in with my
parents.”
She
continues, “I will also be able to save the money I would’ve used on a cheaper
apartment and apply that toward expenses, medical and other, later on.”
Being Mommy
 |
| Lily holds her daughter Lois Schoenhals at Lois' fourth birthday party. |
“I
have three reasons for having this surgery; first so that my daughter doesn’t
have to grow up without a mother, like some of my cousins had to do because of
this gene,” she explains ticking her reasons off on her fingers as she goes.
“Second,
I’m doing it for myself and third for my cousins. But first and foremost is
Lois. I have a responsibility to her and I need to make sure that I am around
to fulfill it.”
Lois
is still too young to understand what’s going on right now, which is in part
why Lily decided to go ahead with her surgeries now. She knew that the amount
of stress that Lois will feel now will be considerably less than what she might
feel in five or ten years.
“She
asks a lot of questions, wanted to go to doctor’s visits with me, and after the
surgery she even went with me when I had my drains removed. She’s not
frightened by it, just curious."
5:30 a.m.
Lily
arrives at the hospital with her mom, dad and friend, Emily, in tow. They wait
approximately ten minutes before being escorted into the back.
She
is then asked to shed her clothes and to put on the hospital’s stylish gown and
thigh-high compression socks that are almost too confusing for her, her mom, and
her friend to figure out. Once they’re on she still isn’t sure they’re on
correctly. When her dad is invited back into the room they all have a momentary
chuckle about it.
Then
nurses begin to file in one after another. Tension
starts to build, the room feels smaller, and the Webb’s become stoic.
Her
dad is the quietest of the bunch, staring on with his arms held firmly against
his chest. It’s not until after the surgery that he admits to her what he’d
been thinking.
 |
| Lily's parents, Robin and David Webb, wait with Lily before her double mastectomy. |
“The
gene comes from my dad’s side of the family,” Lily explains. “He told me that
he was watching me prepare for this and was angry at himself for having given
me the gene. I told him that his only other option would’ve been not to have me
and that I’d much rather have my life and this gene than no life at all.”
Lily
keeps her face calm, trying to convince her parents, her friend and herself
that she’s fine, but her body language speaks differently. She tucks her legs
back and balls her hands into fists.
 |
| Lily waits for her double mastectomy. |
|
|
|
|
Two
hours, five nurses, two doctors and an anesthesiologist later, the surgeons finally come
to collect her.
She
gets a hug from her friend, then her dad, and a hug and kiss from her mom. She
doesn’t see what happens when she’s wheeled out of the room.
She
doesn’t see her mom give way to tears, or the huge hug her dad
gives her mom.
She
doesn’t sit anxiously with her mom and friend while they wait to hear how she
doing, or hear her mom say, “I’m so proud of her.”
 |
| Robin, Lily's mom, kisses her before she is taken into surgery. |
A Success
Surgery
is over. It was a success. Her mom and friend go to her room to find her
groggy, but awake. The doctors assure her that everything went according to plan.
She had a double mastectomy and was able to keep her own breast skin, and her
likelihood of getting cancer has dropped from over 90 percent to three percent, in just over
eight hours of surgery.
Friends and
Family
Lily
feels very fortunate after her surgery to have such warm and genuine support
from her friends and family.
Her
little sister Xanthe flew in from Winchester, Virginia, with her infant
daughter Zara, so that she could be with Lily after her surgery.
 |
| Lois, Lily, Lily's little sister, Xanthe Aintablian, and niece, Zara
Aintablian, spend quality time together after Lily's surgery. The "grenades" are
still attached to Lily's sides. Xanthe and Lois both have a 50 percent chance of having the BRCA2 gene mutation. If Xanthe tests positive
for the mutation then her daughter, Zara, will have a 25 percent chance
of testing positive. |
Lily’s
mom, Robyn, helped her walk, dress, eat, sit up and do other basic tasks, which
we all take for granted every day, for several days after the surgery.
“I
couldn’t even hold a bottle of water without her help,” Lily recounts.
She
had visits from many of her friends and extended family.
“The
presence of my extended family was a sign of their acceptance and support of
the path I have chosen, which was originally considered to be extreme.”
A Possibility
Lily
sits in Dr. Chen’s office for one of her post-surgery tissue-expander fills.
The doctor sticks a magnetic needle in her chest which finds an integrated port
in her tissue-expander and allows saline to be injected, stretching the muscle
to prepare for the implant she will receive in her next surgery.
Her
daughter, Lois, and mom, Robyn, sit with her as she goes through the process.
“Lois
was really interested in seeing how it works. She asked to come,” Lily smiles
recounting Lois’ curiosity. “Lois has been a little frustrated that I can’t
pick her up. Coming to the doctor’s appointments have helped her to understand
why that is.”
 |
| Lois watches as Lily recieves a tissue-expander fill, post surgery. |
Lois
has even shown great empathy toward her mother despite not completely
understanding.
A
few weeks ago Lily and Lois went on a walk with a friend and Lois fell down and
hurt herself. Lily immediately bent down to pick her up and comfort her. Lois
waved her away in the midst of tears and said, “Let Emily hold me.” She was too
afraid to let Lily hold her because she knew it would hurt.
Lois
has a 50 percent chance of testing positive for the BRCA2 Gene Mutation, so
Lily hopes that everything she has done now will mean a lot more to Lois later
on in life than just being able to grow up with her mom.
Lily
realizes that it’s not likely that Lois will remember much of what she did but
when she’s old enough to appreciate the significance of it she’ll have her
mother’s blog and a photo record provided by their friend Emily.
In 14 years Lois will be tested for the gene mutation and if she has it
she’ll then have to make a decision on how to proceed.
If
she chooses to take the preventative measures she’ll have a clear record of what
her mother went through, plus the advantage of 14 plus years of further
medical advancements.
“The
hope is that the detection will be so advanced that preventative measures will
be better and that she might not even need to have the surgeries,” Lily says.
A Brighter
Future
With
one surgery behind her, one planned for the week before Christmas, and a
hysterectomy expected in five years, you might think that Lily would be less
than optimistic, however the opposite is true.
“Some
people may accept that eventually these things may need to be done, but will
still wonder why I feel the need to do them now. I turned 30 in April, and it
is unlikely that I would see cancer develop until I am between 35-40. My answer
is that I know exactly what my life involves right now.
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| Lily gives Lois a piggy-back ride. |
“I
have an amazing family, most of whom are currently local and can assist me
after I’ve had the surgeries. This may not be the case in 5 years. I work for
an amazing company with managers who have assured me that they will work with
me during the recovery period. I don’t know who my managers will be in 5 years.
I have an insurance company that will most likely cover the procedures. I have
no idea who I will be insured by in 5 years, if at all [...] I am healthy and
happy right now, putting me in an optimal place to make such a decision.
(Webbmakingthebreastofit.blogspot.com, My BRCA2 Journey.)”
Lily
takes one last look at her aunt and grandparent's graves then stands up, takes
her daughters hand and heads back to the path.
“I’m
trying to make the best of it. It’s all anyone can do with the challenges they
are presented in this life.”
Dying
young is no longer an inevitability.
“I
am the mother of a beautiful little girl. I am a Regulatory Specialist at an
amazing company. I am a friend to some amazing people. I am scuffed up but not
broken. I am really happy with who I am. I am grateful to my family. I am
blessed, (Webbmaikingthebreastofit.blogspot.com, Profile.)”
If you’d like to
learn more about Lily or BRCA2 gene mutations you can visit: http://webbmakingthebreastofit.blogspot.com/, or read my news article entitled, Understanding BRCA Gene Mutations: What They Really Mean For Those Diagnosed
