Monday, October 22,
2012 was my first full day back to work following Mom’s illness and
funeral. I was happy to be back and I
was welcomed with open arms from my employer and co-workers. I was ready to get back to normalcy but I
couldn’t help but think of all that had gone on in six short (yet very long)
weeks. I could not believe that Mom was
given one year to live but 42 days later we were planning her funeral. If Mom could have chosen how the end would
happen, I think she would have chosen the exact way it happened. I can still hear Mom say, “If this is all
that is left for me on this earth, I don’t want it.” She was ready to leave this earth despite
being sad to leave her family behind.
She knew eternal life was around the corner and she was ready to leave
be welcomed to her eternal life.
Typically, I am the
first one to arrive at the office. I
work a flex schedule so I can get my eight hours in and get off at a decent
time so I can spend the afternoon with our kids. I remember my first morning back at the
office. As I was going through my emails I swear I heard in a loud whisper,
“Kirby!” I sat there wondering if my
mind was playing tricks on me. A few
seconds later I heard again, “Kirby!” I
quickly turned to my left where I heard the sound and of course nothing was
there. I continued on with my work and I
did not hear anything else. I continued
to have some nightmares so I attributed the sounds to sleep deprivation. Later on that week an email popped up from
“Nanci Schmidt.” The email caught me by
surprise. Obviously the email was not
from Mom but it was from a paralegal on a case I was working on. Regardless, the sight of Mom’s name (minus
the difference in spelling) brought me comfort.
I knew she was with us and the email was a subtle reminder.
Later on my co-workers
and boss arrived. Each and every one of
them stopped by my office to offer their condolences and to remind me to speak
up and ask for help if I needed it. They
know how independent I am and very seldom do I ask for help in terms of dealing
with personal situations. I couldn’t be
more blessed to work for a caring, kind boss as well as work with extraordinary
nice people. My work family is
definitely my second family and each and every one holds a special place in my
heart.
In an effort to be
proactive with my health, I had made an appointment at the Breast Cancer
Prevention Center at the University of Kansas Hospital. As soon as I found out I was BRCA2+ I made
the appointment. We were told Mom had a
year to live so I wanted to take the first available appointment so I could get
it out of the way and so I could reassure Mom that I went to the appointment
and what the surveillance plan would be (despite the fact she did not know I
was BRCA2+). The first available
appointment was October 23, 2012.
It was extremely hard
going to my first appointment on October 23rd.
I was not emotionally prepared for the appointment given the fact it was
only six days after Mom’s funeral. The
Breast Cancer Prevention Center is located in a cancer center. Missys’ Boutique is also located in the same
facility. All of the negative feelings
came flooding back as soon as I parked and walked in. When I got off the
elevator, Missys’ Boutique was right there.
I had a flashback and I could vividly see Mom and I walking around the
quaint store just 18 months prior when she was shopping for bras and
prosthetics following her mastectomy. I
also saw several people who were very sick.
The sight of wheel chairs, oxygen tanks, face masks, bald heads, etc.
made me extremely sad. It took all I had
to keep walking towards the office rather than turning around and leaving. In fact, as soon as I saw the sign for the
Breast Cancer Prevention Center, I stood there and stared at it for a short
time. I strongly considered walking away
and never going back. I have a bad habit of making appointments and then
cancelling them at the last minute but in this situation, I knew I owed it to
Mom to move forward with my appointment.
I made promised Josh I would follow through and I wanted to honor Mom by
moving forward with preventative care.
I pulled myself
together and walked into the office. I
was greeted by a very welcoming staff.
As soon as I filled out the paperwork a nurse called me back to the exam
room. I made it two steps down the hall
towards the exam room and the tears started flowing. I hadn’t cried like that in a very long time. For one, I was terrified of being there and
two, all of the emotions of losing Mom just days prior were too raw. I was still processing the fact Mom was not
going to be a phone call away when I was done at the appointment. I seriously cried the entire time I was there. I remember apologizing over and over because
of the way I was acting. The staff was
very understanding and they reassured me I was doing the right thing by taking
the first step in being proactive.
The main doctor and the
physician assistant came in shortly thereafter and once again, I started
crying. We reviewed Mom’s history with
breast cancer and I shared with them she had just passed away 10 days
prior. The doctor did a breast exam and
reassured me everything was normal. Her
recommendation was to have a baseline mammogram and to continue with
surveillance every six months.
Surveillance includes a physical exam and a rotation of mammograms, MRIs
and ultrasounds every six months. A
mammogram is important, however, the MRI is more sensitive and it typically
picks up things that a mammogram cannot.
The same is true with ultrasounds.
Each test is beneficial and high risk women are encouraged to undergo an
intense surveillance plan. Some women
chose to undergo surveillance while others chose surgery.
I felt a huge sense of
relief once the physical exam was over and once I understood what the
surveillance program entailed. I got
dressed and she asked me to meet her in the consultation room so I could
undergo a risk assessment. We met in the
consultation room and I told her I would hear her out but I “have already made
up my mind.” She wanted to talk about
several clinical studies as well as the surveillance regimen. Josh and I agreed we wanted to have one more
child and then I would undergo a prophylactic bilateral mastectomy with
reconstruction. Given Mom’s strong history
and early diagnosis at the age of 36, I was not willing to have anxiety every 6
months until cancer was found. I told
her that breast cancer destroyed our family once, therefore I was willing to
take extreme measures to ensure this would never happen again.
The doctor understood
and gave me her recommendation. She
wanted me to have a baseline mammogram and MRI and if both tests came back
negative, she would give us her blessing to start trying for baby number 3. She reassured me that my high risk for breast
cancer would really “kick in” at age 30.
Dr. Fabian told me “more times than not, daughters follow in their
mother’s footsteps.” Dr. Fabian agreed
with the idea of conceiving another child before I undergo surgery given the
fact I was so young. She mentioned if I
were closer to 35-40 years old, she would strongly discourage our plan to try
for another baby and she would recommend I move forward with preventative surgery.
Below is a summary of
my records from Dr. Fabian following the October 23, 2012 visit:
“Kirby
is a 28 year old premenopausal female who has a BRCA2 mutation. She has a
family history of premenopausal breast cancer in her mother, diagnosed at age
36. She currently has two children and
is considering a third. She was here today
in consultation to discuss her options for treatment and surveillance. She is interested in bilateral prophylactic
mastectomy after the birth of her 3rd child.
Her
mother was diagnosed at age 36, recurrence at age 54 (both triple negative
disease). She passed away on October 13,
2012 from metastic disease. She has been
exercising, however, she has not exercised since her mother was diagnosed with
metastic disease 6 weeks ago.
Surveillance
for women with BRCA2 should start breast screening at age 25 with twice yearly
clinical breast exam and breast MRI in addition to mammography. In addition, ultrasound with yearly CA125
blood test is advised beginning between the ages of 25-35 and continued until
the uterus and ovaries are removed (usually at age 35 or after childbearing has
been completed). A total hysterectomy
reduces the risk of ovarian cancer by 95%, however, women who undergo
oophorectomy (removal of ovaries) prior to age 45 have an 84% increased risk of
fatal cardiovascular events and an increased risk of cognitive impairment as
well.
We
gave her the following recommendations: 1) Women with a BRCA 2 mutation have
50-85% risk of breast cancer and a 15-40% chance of ovarian cancer. This equates to risk for breast cancer of 2%
between the ages of 30 and 70 (meaning my risk goes up 2% every year after 30)
and 1% for ovarian cancer generally after age 40 (my risk for ovarian cancer
goes up 1% every year after 40).
Kirby
could have a bilateral prophylactic mastectomy with reconstruction which would
reduce her risk by 95%. At this point
this is what she plans on doing but she thinks that she would like to have
another child first. I have encouraged
her to exercise and lose as much weight as possible before this operation.
Until
her breasts are removed we will continue with surveillance. She will return on 11/12/12 for a screening
mammogram and we will plan on getting a bilateral breast MRI within the next
couple of months before she becomes pregnant.
I am embarrassed to
admit that my body mass index at that time was well above where it should have
been. Prior to Mom’s terminal illness, I
knew I needed to lose weight before we started trying for another baby. I had lost twenty pounds and by diet and
exercise but I am a stress eater. As soon
as we learned of the extent of Mom’s illness, I quit exercising and I ate
whatever I wanted, when I wanted. Given
Mom’s strong history with breast cancer, my BRCA2 status and being overweight,
my risk assessment indicated I my lifetime risk of breast cancer is 94.5% and my
lifetime risk of ovarian cancer is between 40-50%.
ASSESSMENT- 1) very
high risk for the development of breast cancer secondary to BRCA 2
mutation; 2) high risk for the development of ovarian cancer secondary
to BRCA 2 mutation.
When I got home that evening I was a little upset by
the appointment but I was also reassured.
I see the BRCA “diagnosis” as a curse and a blessing at the same
time. It is very much a curse because it
increases your risk for cancer but I also see it as a blessing because doctors
pay very close attention to patients with this status and it is
considered a diagnosis so insurance pays for the testing and procedures. I was
relieved that my first appointment was over, however, I dreaded the mammogram
and MRI. I knew it was something I had
to do to honor Mom’s legacy but I also had to do it because I promised Josh I
would be proactive so we could live to see our children and grandchildren. I scheduled my mammogram and MRI for early
November and I headed home.
As previously arranged, Dad packed up his bag, along
with Tess (his black lab) and they drove to Olathe to spend the week of
Halloween with us. The furthest Tess had
been away from the farm was the gas station in Indianola. We weren’t sure how she would do traveling
6-7 hours. It was nice knowing Tess was
with Dad. I hated the thought of Dad
traveling my himself but Tess served as a great distraction. Besides that, Bryson and Holden loved the
thought of having a dog. They had been
asking for a dog so we told them they could see what it would be like having
Tess at our house for a week.
The weather in October was not typical in 2012. I remember it being somewhat mild, however,
it was nice enough to have the windows open.
After I got home from work, Dad and I sat in the living room talking
while the boys played out back with Tess.
They were having fun walking her around on her leash in the back
yard. I was somewhat nervous letting the
boys play outside but our backyard is fenced in and we could see them from our
living room. I expressed to Dad how
nervous I was about the boys being outside by themselves because of the egress
window. We talked about how much Mom
disliked that window in fear of one of the kids falling down inside the window
well. Our intentions were to buy a cover
however, after living in the house for 5 years, we failed to do so.
Dad and I were catching up in the living room and
discussing how weird it was that Mom was really gone. It seemed like she had been gone for a long
time but in all actuality, she had only been gone 18 days. As we were talking I heard a faint cry. My heart stopped once I realized the distant
cry was coming from Holden. Just then, I
heard Bryson’s voice getting closer and closer to our screen door. “Mom!
Mom! Holden fell in the window!” My heart sunk and my adrenaline kicked in
high gear! I knew Holden was alive because I could hear him crying but I was
terrified to look down into the window well in fear of what we were going to
find. Dad, Bryson and I looked down the
4 ½ foot hole and found Holden laying on his back. His left leg was bent backward and his head
was in between two large boulders. I
jumped down and picked him up. He was
crying but everything seemed to be intact.
I asked him if he was okay and he said yes as he was sobbing. I think he was more frightened than
anything.
I asked Bryson what happened and he said they were
playing with Tess and as Holden was walking backwards with the leash, he
stepped right into the uncovered window well.
He fell flat on his back. We
brought Holden inside and looked him over from head to toe. It gives me the chills to report that Holden
walked away without a bruise or a scratch. As I mentioned earlier, his head landed in
between two large rocks. The large rocks
were less than a foot a part from one another.
He could have easily hit his head and broken several bones. We truly feel Mom, our guardian angel was
there and she caught him as he fell.
There is no earthly explanation how he walked away without a single
bruise or scratch, head injury and/or broken bones. Needless to say, the window well is now
covered and we have not had any other incidences with it! Thanks Mom!
My baseline mammogram was scheduled for November 1,
2012. Once again my nerves got the best
of me as I pulled up to the cancer center.
I knew this was something that had to be done but I did not like the
feelings I was having as I parked my car and walked into the cancer
center. I got checked in and waited for
like what seemed like forever. Once they
called my name, I was taken to a room with several dressing rooms. I was told to take off my shirt and to put on
a lovely pink gown from the waist up.
Once I got my gown put on, I put my personal belongings in a locker and
entered the holding room. As I entered the
holding room I couldn’t help but notice I was the youngest women by at least 20
years. I felt as if the other women were
staring at me but I am sure they were wondering why I was there considering my
age.
I was nervous as could be and it was obvious the
other ladies were nervous too. Nobody
talked. We all just sat there hoping our
name was the next one to be called. I
waited for approximately 20-30 minutes and my name was finally called. The tech was wonderful. I told her my history and she patiently
listened. As usual, I cried during most
of the visit—not because it hurt but because of the circumstances. I was not excited about being there but I
knew this is what I had to do. Once I
was done, the tech told me to go wait in the holding room. She informed me it is not uncommon to have to
repeat the mammogram and because that was my first, there was nothing to
compare it to. I sat nervously in the
waiting room, expecting to get a call back.
A nurse came and got me and took me to another room. She informed me the radiologist looked at my
mammogram and everything looked great!
She told me I could get my shirt back on and she wished me a great rest
of the day! I was on cloud 9 when I
left. I knew I still had to have an MRI
before we could start trying for our third child but it was nice to check the
mammogram off the list. I called my Dad
to let him know my baseline mammogram was done and it was clear! “Thank God!” he exclaimed when I told him the
news. I did not tell him I had an
appointment the following week for my baseline MRI. I figured he would put two and two together
and figure out my BRCA2 status. I did
not feel the timing was right at that point to share with him my actual results
of the genetic testing.
On November 8, 2012 I returned to the cancer center
so I could have my breast MRI. Every
time I had to go to the cancer center my stomach would literally get knots in
it. I thought it would get easier each
time I went but it never got easier. I
was scared to death to have an MRI. This
was definitely a first and I had no idea what to expect. I sat impatiently in the waiting room and
they eventually called me back. I had to
wear a gown from head to toe and I had to make sure all of my bobby pins were
removed from my hair. The nurse
explained the procedure. I had to get an
IV started so I could have an MRI with contrast. I went to a holding room and an IV was
started. The nurse then led me back to
the room so I could have the MRI.
I had the worst stomach ache when I arrived in the
room with the MRI. The nurse told me
there is no lady like way to get on the table of the MRI. Unfortunately, a breast MRI has to be
completed with the patient laying on her stomach. I threw open my gown and laid down on my
stomach on the table. Once I was
situated, the table rolled back into the MRI machine. They gave me a squeeze ball so I could alert
the tech at any time during the procedure should I experience any
problems. The tech told me test would
take approximately 30-40 minutes. I was told to hold as still as possible
otherwise the test would have to be repeated at a later date. I tried to stay positive and as still as
possible during the exam but it was scary.
I tried to distract myself by singing songs in my head but I was growing
increasingly nervous throughout the test.
At one point during the test I started panicking! I thought of my poor mother having an MRI
just weeks before. I couldn’t even begin
to imagine the fear she must have felt but the thought of it alone over took
me. I almost squeezed the ball to have
the tech stop the test but then I decided to just pray. I knew if they had to stop the test, I would
have to reschedule and do it all over again.
The MRI is so sensitive that it has to be scheduled around a woman’s
monthly cycle. I had a plan and I wanted
to stay on track. I knew if the test had
to be stopped, I would have to wait another month to schedule the MRI and that
would prolong our goal of conceiving our third baby. Finally, after about 35
minutes, I was done. The tech told me
that I would receive a call in a week or so with the results. The waiting game was not easy for me. I
wanted to know the test was clear so my mind would be at ease and so we could
move forward with our plan. I received a
call approximately 5 days later from one of the nurses to let me know the MRI
was clean!
Josh and I went out for dinner on Friday, November
16th to celebrate my birthday and to celebrate the great results
from my first two diagnostic tests. We
went to the Elephant Bar and Grill and we had a nice, quiet dinner. We agreed that since my diagnostic tests came
back clean we would move forward with our plan.
The following week was Thanksgiving and Dad’s 56th
birthday. Ironically, Dad’s birthday
fell on Thanksgiving that year. I do not
recall the specifics but it seems as if Dad and Tess were at our house the days
leading up to Thanksgiving. We were
planning on spending Thanksgiving in Gretna with Rochelle, Scott and the
girls. Josh, Bryson and Holden rode
together and I rode with Dad in his truck to Gretna. I had previously bought Dad’s birthday card
but rather than mailing it, I wanted to take it with us to Gretna so he could
open it on his birthday. I grabbed the
card and unsealed envelope as we left our house. I put the card and envelope in the space
below the cup holder in Dad’s truck and away we went. As we were driving, Dad and I heard a strange
noise but we did not think much of it.
As we got close to Gretna, I started feeling
emotional. I was very excited to see the
rest of our family but I knew it was going to be difficult walking into
Rochelle and Scott’s house for the first time since Mom passed away. It had only been a little over one month and
I was not sure how I was going to handle being in the house where Mom passed
away. I was also sad knowing this was
the first holiday we were going to celebrate without Mom. This was the first of many “firsts.” I could not imagine having Thanksgiving
without Mom. In years past, we would go
to the farm for Thanksgiving and Mom would plan and prepare the entire
meal. Rochelle and I would help but Mom
was definitely the head chef. We warned
the guys that our first Thanksgiving feast without Mom would be memorable
because we were not sure if we could prepare an entire feast without Mom’s
guidance. We decided to have fun with it
and cook away. Surprisingly, it all
turned out well. The only thing missing
was…Mom.
As we were debating on “how much of this and how
much of that” to put in the numerous side dishes, Dad received several texts
from family and friends wishing him happy birthday and happy Thanksgiving. The messages were heartfelt and it was a very
emotional day. In order to try to
distract from the sadness, I asked Dad for the keys to his truck so I could go
get his birthday card. I went to the
truck, grabbed his card and went back inside.
Dad put on his glasses and took the card out of the envelope. As he was opening the card, Mom’s picture
fell out of the card. We all stopped in
our tracks! We received some laminated
cards with Mom’s picture and a nice poem as a gift following her death. We were dumbfounded when Mom’s picture fell
out of Dad’s birthday card. Dad kept the
laminated card of Mom in his truck and as we were traveling to Gretna, the
noise Dad and I heard must have been Mom’s picture falling into his birthday
card. We took that as a sign that Mom
was wishing him a happy birthday! What
were the chances that the laminated card would fall in the inside of his
birthday card? We felt blessed and the
somber mood was lifted!
We ended up having a nice Thanksgiving weekend. Our family tradition is to take part in Black
Friday. Dad was stressed out about
shopping for the grandkids for Christmas because that is something Mom always
did. Dad would go along with Mom but
ultimately Mom would pick out the gifts and wrap them. Rather than us picking out something for our
kids, we talked Dad into coming along with us to experience Black Friday in the
city. He had gone with us previously in
McCook but it is a whole different experience in the city. As soon as we pulled up to Wal-Mart in
Gretna, Dad started getting grouchy. We
had to park out in the middle of nowhere and walk quite a distance in the
bitter cold to fight the obnoxious crowd.
Rochelle, Josh and I were excited to get shopping but I would venture to
say Dad would have rather been anywhere but there. We found what we set out to get and we were
discussing our next stop. Dad
interrupted us and told us to take him back home. He had enough shopping after one stop and he
made it abundantly clear he was done shopping!
Rochelle, Josh and I dropped him off at the house with Scott and the
kids and away we went. Several hours
later we returned with all of our Christmas shopping complete!
I was sad to see the weekend end but we were already
planning our next get together for Anisten’s birthday party. Our family headed home and Dad stayed with
Rochelle and Scott for a few more days.
There was no rush to get home because the farming season was over and
there was no point sending Dad home to an empty house.
The following day at work, I had several emails and
voicemails to get through. As I was
listening to my voicemails, I noticed I had 19 saved messages. I decided that was as good as time as any to
review the saved messages to see if there was anything that needed to be
addressed or if I could delete the old messages. The first several messages were related to
cases that had settled therefore I deleted them. I would listen to the first few seconds of
the message and hit “7” to delete the message.
I was flying through the old messages, assuming I could delete the
subsequent ones. My right finger was on
“7” and a pen was in my left hand in the off chance I needed to write down a
message. All of a sudden I heard, “Hi
sweetheart it’s Mom.” I couldn’t believe my ears. Out of habit, I almost pressed “7” and
deleted the message. I stopped myself
just in time and I continued to listen to the rest of the message. I was so excited to hear her voice. I don’t know what prompted me to save her
message from August 2012 but I am so thankful I did. Below is a link to the voicemail from Mom.
https://www.youtube.com/watch?v=_okyM8O7uCc&feature=youtu.be
I immediately called Dad and Rochelle to let them
know the treasure I found! I have the
capability at work to convert voicemails to emails therefore I sent the
email/voicemail to Dad and Rochelle so they could hear Mom’s voice. We were all very excited and felt comforted
with the sound of her voice.
On December 18, 2012, we found out I was
pregnant! My anticipated due date was
August 31, 2013—exactly one year from the day we learned Mom had several spots
scattered throughout her brain. December
18, 2012 was another big day in our family.
It was the day Rochelle went to the doctor to get her baseline mammogram
like she promised Mom she would do.
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