Monday, September 24, 2012 is a day I will never
forget. It was a very emotional day for
many reasons but mainly because I received two faxes within minutes of one
another that contained information on Mom’s situation as well as the results of
my genetic testing. I could feel myself
trembling as the faxes came in one right after the other. I have a direct fax line at work and a
majority of the area codes I receive faxes from are 816 and 913 which are from
the Kansas City area. The two faxes I
received on September 24, 2012 were both 402 area codes. I felt as if I had been punched in the gut,
kicked in the shins and slapped in the face amongst a whole host of other
feelings. My stomach was in a knot
because I knew the faxes contained personal health information from the
University of Nebraska Medical Center. I
dreaded opening the attachments because I had a strong feeling the information contained
within the documents were not going to be good.
I was in the process of handling paperwork for Mom
and Dad for a cancer policy they purchased in 1992. In July of 1992, a sleazy salesman showed up
at our door in the middle of nowhere Nebraska trying to sell a cancer policy to
my young parents. The man was abrupt and
rude. Mom and Dad were not buying into
his sales pitch and Dad eventually kicked him out of our house when he looked
at Mom, put his finger in her face and said, “You are going to die of
cancer.” A few days later a nice, clean
cut salesman showed up at the door wanting to sell Mom and Dad a cancer
policy. This man was from a different
company and was professional. Mom and
Dad decided to listen and ultimately purchased a policy. It is one of those policies in life that you
never want to have to use but you are glad it is there should you need it.
As previously mentioned in a prior post, I had a
hard time stepping in as a care taker. I
finally felt like I was doing my part in because I was able to assist with
processing Mom’s claims and fighting with the insurance company regarding
claims made against the cancer policy purchased in 1992. I am a paralegal at a law firm that typically
defends lawsuits but in the situation with Mom, we were on the other side of
it. It was awesome to see how God paved
the path and led us to our careers so we could be able to help out in a
meaningful way during Mom’s illness. It
was perfect that Rochelle is a nurse and could help with care taking, talking
to doctors and understanding the medical jargon. Rochelle also had access to awesome social
workers who could provide support and advice. I was able to help file claims
and do what was needed to make sure the insurance company was not going to deny
claims that were submitted correctly. It
was helpful to have access to some pretty amazing attorneys for advice when the
insurance company was acting out of line by denying claims that should have
never been denied. Long story short, after a lot of back and forth phone calls,
faxes, resubmissions (and threats), the insurance company ultimately processed our
claims as they should have in the beginning.
In order to submit claims to the insurance company
for the cancer policy, they required a copy of the pathology reports and
diagnostic reports. Rochelle and Dad
contacted the University of Nebraska Medical Center to request this information
so we could submit the claims to the insurance policy. The first stomach turning fax I received on September
24, 2012 was the dictated report from Mom’s August 31, 2012 MRI of her brain. Up until I read the report, I had strong hope
that Mom was going to win the battle once again. I know it was wishful thinking but I never
wanted to give hope or the possibility of a miracle. I knew it was an uphill battle but I knew Mom
was a fighter and she had won the prior battles. Every ounce of hope was crushed when I opened
the attachment in the fax.
I went straight to the findings and saw numerous, more than 50 and at
that point, I quit reading the report. I
did not need to see the details because I knew nothing positive was going to be
contained within the report. I was crushed and heartbroken. At that moment, barring a miracle, I knew
there was no hope—Mom was going to die.
Below is a copy of the complete report:
INDICATION-
headache and dizziness with history of metastatic breast cancer
FINDINGS-
Numerous, more than 50, small and tiny round enhancing lesions are distributed
throughout bilateral cerebral hemispheres in the cerebellum. In addition, there is extensive
leptomeningeal nodular and coating enhancement about the cerebellum and
cerebral basal though also in the left parietal lobe. There is mildly prominent cortical edema in
the right cerebellar hemisphere thought with only minimal effacement of the
fourth ventricle.
IMPRESSION-
1) widespread brain parenchymal and leptomeningeal metastic disease.
As you can imagine, my head was spinning as I was
trying to come to terms with the situation we were faced with. I knew we were in trouble and I wanted to fix
the problem but obviously there was no fixing to be had.
Within minutes of receiving Mom’s MRI report, I
received another fax from a 402 area code.
Before I could open the fax, my office phone rang and surprise, it was
from a 402 area code. The genetic
counselor called to let me know that I tested positive for the BRCA2 gene. I honestly was not surprised at the results
of the genetic test but it was too much information at once. I was still seeing “numerous, more than 50”
so trying to completely understand all of the information that was being thrown
at me from the genetic counselor was a bit much. I was not devastated by the news that I was
BRCA2 positive because we had a much bigger problem at issue and honestly I
expected it. During our genetic
counseling session, Rochelle and I were told we each had a 50% chance of
carrying the gene. My intuition was
telling me that I was a carrier of the gene.
During the middle of all of this, I was more focused on Mom and how I
was going to deliver the news to my family about the results of the MRI and the
genetic testing.
Shortly after I got off the phone with the genetic
counselor, Rochelle called me on my cell phone.
I could tell she was excited and wanted to share some news with me. She informed me she tested negative for the
BRCA2 gene! I was elated for her but
with her news the obvious question from her was, “Did you receive your
results?” I had played out the scenario
in my head a thousand times of how I would respond when we received the
results. “What if we are both positive?”
“What if we are both negative?” “What if I am positive and she is negative/vice
versa?” The biggest and most bothersome
scenario was if I was positive, should I tell my family? The obvious answer would have been yes if Mom
was not dying. If life would have been
“normal” and we decided to get genetically tested, I would have had no problem
telling my family the news of the positive results. All of a sudden I am in the middle of a moral
battle with myself. It seemed liked
time stood still when Rochelle asked me about my results and I could see all of
the scenarios playing out. At that
moment I decided to tell her I too, tested negative. She was so excited and quickly passed the
phone to Mom.
Before Mom got on the phone, I could hear Rochelle
in the background telling Mom and Dad I tested negative. I felt terrible! I had always been honest with my family but I
could not bring myself to tell my dying mother and grieving father the
“truth.” Mom got on the phone and she
was crying tears of joy. She asked me
several times, “Are you telling me the truth?”
She expressed so much happiness and relief that both of her daughters
tested negative. When we were growing
up, our litmus test for determining whether or not we were telling the truth
was to ask or be asked, “Do you swear on the stack of Bibles?” I fully anticipated this question from
Mom. Naturally, Mom asked, “Do you swear
on the stack of Bibles.” I gulped an
answered, “Yes.” The rest of my day was
ruined. I felt so torn about my
decision. I knew telling her that I
tested positive would only bring her agony but lying to my Mom was such a hard
thing to do. I do not like to refer to
it as a lie but as a selfless act in order to protect Mom. Rochelle and Dad said they could tell Mom was
at peace when she learned that both of us tested negative. I knew at some point I would have to tell my
sister and Dad the actual results of my test but I knew when Mom got to Heaven,
she would know and understand why I did what I did. That evening when Josh got home I shared the
results with him and told him about my decision to not share the results with
my family. He supported me 100%!
I knew it was not up to me to hide information from
my family about Mom’s health but I also knew there was no benefit to telling
them about the numerous spots found on Mom’s brain. I was
having a hard time coping with the fact I just “swore on the stack of Bibles”
to something that was not true. I
carried the burden of the results of the MRI for a couple of days and then I
finally told Rochelle. Her response was
the same as mine—devastation. With her
being in the health field and seeing this daily, she knew the situation was bad
but hearing the results of Mom’s MRI confirmed just how bad the situation
was. Rochelle proceeded to share the
results of Mom’s MRI with Dad.
In order for me to justify not telling Mom the
actual results of my genetic test, I knew I had to be proactive with my
health. I immediately made an
appointment with my OB/GYN for a consultation about the BRCA2 gene. Not only am I at high risk for breast cancer
but I am also at high risk for ovarian cancer. My risk for breast cancer is a lot higher (94.5%)
than my risk for ovarian cancer (50%).
In addition, my risk for breast cancer increases by age 30 and my risk
for ovarian cancer does not increase until age 40. During our discussion we agreed to focus
primarily on the breast cancer prevention side because of the immediate
increased risk. I shared with her our
wishes for a third child. My doctor
agreed with our plan and stated I would undergo surveillance every six months
after the birth of our third child.
Surveillance includes blood work to check my CA125 levels and pelvic
ultrasounds. My doctor provided me with a lot of
information and she referred to the Breast Cancer Prevention Center at the
University of Kansas Medical Center.
My doctor supported my decision to not report the
positive results to my family. She made
me feel at peace with my decision by telling me it was a selfless thing to
do—to protect my dying mother and grieving family. I am a procrastinator when it comes to
medical issues. I have been living in
Olathe for nearly 8 years and I still do not have a primary care
physician. I get nervous when my
biannual dentist appointments roll around and I seldom take any over the
counter medications. I knew if I delayed calling to make an appointment at the
prevention center, it might not ever get done.
The day after my consultation with my OB/GYN I made an appointment for
my initial consultation at the prevention center. My appointment was made for October 24, 2012.
Josh and I spent a lot of time discussing and
researching what the positive results meant.
We already knew what needed to be done to ensure I would never get breast
cancer. I knew I wanted to have
preventative surgery but not yet. The
conversations were very emotional because I knew my risk for developing breast
cancer was very high and but I was not mentally prepared. I wanted to spend as much time with Mom as
possible knowing she was on borrowed time and I wanted a third child. At that
time I did not feel I could possibly have preventative surgery and then proceed
with going through pregnancy. It just
did not feel natural at that point in my life.
Josh expressed his concerns for me waiting to have
surgery. He knows I am a master procrastinator
with medical issues and he feared if I did not have surgery right away it may
never happen. He also expressed concerns
with me developing breast cancer and leaving him as a single dad. We already were blessed with two healthy kids
so it did not make much sense to him to try for a third and potentially leave
him as a single dad to three kids. I
appreciated his concern and his support.
His support of me having preventative surgery shows what kind of a man
he is. He did not care about what I
would look like but he cared that I would be around to share our lives
together. I am so grateful that he
is/was supportive of me having surgery but I just was not mentally prepared at
that moment. I was only 28 years old and
our family was in the middle of dealing with losing Mom. Josh was very understanding and we knew we
would have time to discuss our options.
We knew we would have a lot more information following my first appointment
at the Breast Cancer Prevention Center.
During the process, our family never lost faith or
hope. We were never angry but incredibly
sad. This is not how we imagined our
lives would turn out. A very dear friend
of mine has experienced a lot of sadness and loss in her life. She had just
lost her brother in a tragic accident and she was in the grieving process. When we learned of Mom’s terminal diagnosis,
I contacted her to let her know. I
really value our friendship and am so thankful our paths crossed. She told me it is okay to be mad and warned
me that at some point I will be mad and it is all part of the grieving process. I can honestly say I was not mad at God but I
was very sad and felt helpless. During
Mom’s illness, I developed a much closer relationship with God. I have always had faith but during Mom’s
illness I really found God. In the past
I heard people talking about accepting God but I never really understood
this. I now know and I am so thankful I
have a new found relationship with Him.
I still worry about things but not like I used to. I accepted the fact that we are not in
control of our lives and we have to trust God to see us through situations and
that everything happens for a reason.
Sometimes it is hard to see during the midst of the storm but it is very
reassuring knowing that God has our lives planned out and all we have to do is
trust Him. I am at peace with everything that has happened and am prepared to
be at peace with situations I am faced with in the future.
I knew that all of this was happening for a reason
and I knew we had to walk by faith, not by sight. I dreaded the day Mom would pass away but
seeing how strong she was during her illness confirmed her faith and we knew
she was going to go to a much better place.
I feel as if we were being tested and I am happy to say, I feel our
family passed the test! We remained
faithful and continued to pray for peace and comfort for Mom during her final
days as well as her transition into eternal life.
Below are the lyrics and a link to the song "Fall Apart" by Josh Wilson
Why in the world
did I think I could
Only get to know You when my life was good
When everything just falls in place
The easiest thing is to give You praise
Now it all seems upside down
'Cause my whole world is caving in
But I feel You now more than I did then
How can I come to the end of me
And somehow still have all I need
God, I want to now You more
Maybe this is how it starts
I find You when I fall apart
Blessed are the ones who understand
We got nothing to bring but empty hands
Nothing to hide and nothing to prove
Our heartbreak brings us back to You
And it all seems upside down
I don't know how long this will last
I'm praying for the pain to pass
But maybe this is the best thing
That has ever happened to me
Only get to know You when my life was good
When everything just falls in place
The easiest thing is to give You praise
Now it all seems upside down
'Cause my whole world is caving in
But I feel You now more than I did then
How can I come to the end of me
And somehow still have all I need
God, I want to now You more
Maybe this is how it starts
I find You when I fall apart
Blessed are the ones who understand
We got nothing to bring but empty hands
Nothing to hide and nothing to prove
Our heartbreak brings us back to You
And it all seems upside down
I don't know how long this will last
I'm praying for the pain to pass
But maybe this is the best thing
That has ever happened to me
No comments:
Post a Comment