Following Kardyn’s baptism weekend, I felt sad and
more worried than I previously had. Mom
did not respond to some of my early morning emails so of course my worry radar
was on high alert. I called Mom in the
evening and I asked her if she had anymore spells with her weak legs like she
had the weekend before. Mom assured me
she had not but she did mention she stayed home because she was not feeling
well. She said she needed to catch up on
her sleep and shake whatever she had going on.
I was excited when Mom responded to my early morning email on Wednesday,
August 29, 2012. She said she was having
a good day and reminded me she had physical therapy later on in the
morning. My stomach knots were a little
better after receiving the email from Mom.
Little did I know that would be the last email I would ever receive from
Mom.
On August 31, 2012 I walked back into my office as
my cell phone was buzzing. I quickly
grabbed it and saw it was “Dad’s Cell.”
I felt all of the emotions possible in the split second before I
answered my phone. I was suspicious why
Dad was calling me during the work day.
I grabbed my phone and shut my door.
Dad was calm on the other end of the line but he informed me they were
on their way to Omaha. My knees began to
wobble and my hands were shaking. I
tried to control the tremble in my voice but I was truly afraid. Dad said Mom was pretty dizzy and her neck
was very swollen. They called her doctor
and the doctor recommended they travel to Omaha so Mom could be seen. They were trying to get there as quickly as
they could knowing the Labor Day Weekend meant a long weekend for the doctors
and staff.
We later learned that the turning point for them
deciding to call the doctor was when Mom barely made it to the field to pick up
Dad. Mom was resting in the chair at
home and Dad was in the field. He told
Mom he would call and let her know when he was ready. Mom fell asleep and when she woke up she was
a bit frantic knowing she had overslept.
She stumbled her way through the kitchen and out the door. She got in the truck, backed out and headed
north to Frontier County to meet Dad.
She told Dad she was so dizzy and she could hardly see when she was
driving. By the grace of God, Mom made
it safe to Dad. It was at that moment
Mom and Dad decided it was time to call her doctor. The dizziness and headaches had gotten out of
control and it was time to figure out what was going on.
Dad and Mom stopped in Gretna to pick up Rochelle so
she could go to the appointment with them.
When they got to the hospital they were told that because Mom had a port
there wasn’t anybody there that could access her port for the contrast that
needed to be given before the MRI. They
were told they would have to call and make an appointment and hopefully get in
on Tuesday (Monday was a holiday).
Rochelle is a very good nurse and advocate for her patients. This time the patient was Mom and there was
no stopping her fierce drive to look out for her number one patient. The hospital found somebody who could access
her port and off to the MRI she went.
Sitting around waiting for the phone to ring was
something I had to do a lot. I needed a
distraction so I called my in-laws and invited myself and the boys over. At that time, Josh was working until 11:30 at
night so it would be a while until he was supposed to get home. As we were eating at Bob and Linda’s house,
Josh called to let me know he was getting off work early. I had called him earlier in the day to let
him know Mom was on her way to Omaha.
Josh and Scott are both very supportive and are always there for my
sister and I.
As we were eating supper, my phone rang and it was
Rochelle. She was crying on the other
end of the line. She told me how scared she was and how she had a really bad
feeling the cancer had spread to Mom’s brain.
I was scared too but I refused to believe this. Rochelle works on the ortho/neuro floor and
she sees brain tumors all too often. She
knows the signs and symptoms and given Mom’s history with breast cancer, she
knew there was a strong possibility this was the case. Rochelle continued to tell me that Mom
literally could not walk when they got to their house. She was very weak and dizzy. Mom had to hold onto Dad and needed to use
the couch and walls to brace herself. We
talked a few more minutes and we ended the call. Rochelle was going to call me as soon as they
knew something.
We finished eating dinner and we headed home. I had the boys in my car and I remember
praying (and crying) the whole way home.
That was the first time I really felt like maybe Mom had a very serious
problem and maybe this time she couldn’t beat it. I hated to think like that but the call from
Rochelle was an eye opening experience.
We got home and put the boys to bed.
Josh and I were in our room talking about the day. I told him about the call from Dad and the
call from Rochelle. As we were talking,
my phone rang and it was Rochelle. I
took the call and went to the spare bedroom.
I closed the door and nervously awaited the news. Rochelle calmly said, “There are spots on her
brain.” Time literally stood still. What?
I asked in disbelief. Rochelle
told me Mom wanted to talk to me. I did
my best to keep calm but I was crumbling.
Mom told me that wasn’t the news she expected. I felt like I was experiencing déjà vu. This call was strikingly similar to the call
I received from Mom in March 2012 when she called to report that the skin
biopsy was malignant. I am sure Mom was
terrified but she calmly explained that is why she was feeling like she
was. There was a sense of relief in her
voice knowing she finally had an answer.
I think she was still in shock as she had just got done talking to the doctor.
Rochelle got back on the phone and said that the
resident had called and asked to talk to Mom.
Rochelle handed the phone to Mom and the doctor reported there were
small spots scattered throughout her brain but the majority of the spots were
concentrated on her cerebellum. The cerebellum is responsible for balance and
controlling movement. This explains why
Mom was having a terrible time with balance and walking. The staff helped get an appointment with Dr.
Reed on Tuesday, September 4, 2012. We
knew September 4, 2012 was going to be a very important appointment and I wanted
to be sure to be there for Mom and my family.
After I talked to Mom and Rochelle, I went back to
our room to let Josh know. I will never
forget the conversation. I told Josh in
a very “matter of fact” way that Mom had spots on her brain. I was numb and in shock so I really wasn’t
comprehending what I was saying. I knew
miracles happen all the time so I did not accept the fact this was a terminal
diagnosis. Josh and I agreed to get
some rest as it was close to 11:30 p.m. and we would head to Gretna on Saturday
morning. That trip was the longest, most
dreaded trip we have ever made. Normally
we would be driving with excitement knowing the weekend was going to be packed
with fun and adventure. We knew this
trip was going to be very somber and filled with sadness. When we arrived everybody was in the
basement. We did our best to be happy
when we got there. Surprisingly things
were fairly calm but there was definitely a large grey cloud
hanging over us.
Mom wanted to get up so Rochelle assisted her with
the walker. They walked to the other end
of the basement and were looking at a quilt.
Scott’s eyes filled up with tears and he told me in more specific detail
about Friday evening. He reiterated that
Mom could not walk and she spent a lot of time hanging over the back of the
couch trying to get reoriented. They
decided a walker would help with getting around so Saturday morning they went
to Gretna Drug and purchased a walker.
Scott said they were all crying when they got back
to their house Friday night. Scott also
shared with me that he and Mom had a conversation and Mom said to Scott, “This
is not going to end well.” This was
another eye opening experience for me to hear that Mom essentially had doubts
she could beat it this time.
Scott and Josh took the kids upstairs and we had a
private family meeting. Mom, Rochelle
and I were sitting on the end of the bed in the basement and Dad was kneeling
on the floor in front of the walker. At
that moment we all lost it. Several
tears were shed as we grasped the reality of the situation. Mom kept looking at Dad and said, “I just
wanted to live to be 70 years old.” I
cry as I type this because at that moment I experienced true sadness for the
first time. Don’t get me wrong, I have
been sad in the past but this situation took it to a level I never knew
existed. We were still holding onto
hope and praying for a miracle but I think we all knew we were coming to the
end of the road. Before that moment, I
had never completely imagined life could go on without Mom. I made comments in the past about not knowing
what I would do without Mom. Mom was our
pillar, our rock and to see her cry literally tore me up inside.
The timing of small things really matters. We were at the height of our sadness when all
of a sudden we could feel the bed teeter tottering! Rochelle, Mom and I made the front of the bed
come off the floor and it gave us a little laugh. We hugged and cried a little
more and agreed we were going to face this head on. We did not want to jump to conclusions until
after we met with Dr. Reed on Tuesday.
We agreed to try to enjoy the weekend as much as we could given the
circumstances.
Jim and Sandi Swanson drove to Gretna and we spent
Sunday afternoon visiting, eating and reminiscing. Mom seemed to enjoy the weekend. She was so
glad to see all of the grandkids and the noise of kids playing and laughing was
music to her ears and medicine for her soul.
We would try to “shush” the kids but Mom insisted on letting them be
kids, once again emphasizing the importance of normalcy.
One of the main things I remember from the weekend
is when we pulled out Rochelle and Scott’s video from their wedding. They were getting ready to celebrate their 7th
Anniversary on September 3, 2012. There
was not a dry eye in the room (except for Mom) when the portion of the video
showed Mom and Dad dancing at the reception.
It was hard to imagine seven years prior, life was “normal” and never in
a million years would we have expected to be sitting around the TV watching how
good life was and wishing to have those moments back. Life gets put into perspective when sadness
and tragedy strike. All of the petty
things that were going on went out the window when we were faced with the
reality of Mom’s situation with her health.
We spent some time talking about the plans for Mom
and Dad. Rochelle and Scott graciously
opened their house up to Mom and Dad.
Rochelle and Scott insisted on them staying with them so Mom could be
close to her doctors. Mom felt more
comfortable in Gretna but she did not want to be a burden to Rochelle, Scott
and their girls. Mom also knew it was
the end of the farming season and harvest was right around the corner. She was conflicted because she knew they need
to be at the farm but knew Dad would need help caring for her. After some discussion, Mom and Dad accepted
the invitation to stay with Rochelle and Scott.
What a blessing this was! It was
comforting knowing Mom and Dad always had somebody around to help. It was also nice knowing they were only 3 ½
hours away from Josh and I rather than 7.
Mom and Dad were so thankful and appreciative for the offer.
We were encouraged on Sunday when Mom suggested we
get out of the house. She was not one to
sit around so she was ready to see outside.
We drove to Mahoney State Park, the same place we went camping in October 2010
when Mom got her port put in. We decided
to drive through the “safari” so the kids could see all of the animals. Mom enjoyed getting out but the motion and
bumps made her dizzy. She was a trooper
but she was glad to be back home, sitting still. When we got home, we enjoyed a nice lasagna,
courtesy of Chef Scott! The kids enjoyed
the outing and it was a nice way to distract us from the upcoming appointment
with Dr. Reed on Tuesday. Mom joined us
at the table and ate really well. She
was on steroids so the doctors warned us she would eat more than normal.
Josh, Bryson, Anisten, Holden and I stayed at the
Holiday Inn Express in Gretna/Omaha. Mom and Dad were in the spare bedroom in
the basement and we just decided it would be nice to have a little more
space. The kids were excited to stay at
a hotel. They remembered the trip to
Chicago and all of the fun hotels we stayed in.
I remember not sleeping well on Monday night. I dreaded the trip to Dr. Reed’s on
Tuesday. We knew we had to go but it was
nice to live in denial for a short time because we knew the appointment on
Tuesday may change our lives forever. I
was trying my best to soak in all of the time I could with Mom and I did my
best to stay as positive as I could. I
could not fall asleep that night at the hotel. I tossed and turned and had a
sick stomach. I prayed asking God to
please give Mom at least one year. I
finally fell asleep around 2:00 a.m. and the alarm went off around 6:30. The kids and I went to the breakfast room and
had breakfast. I could not eat to the
nerves. The kids enjoyed gooey cinnamon
rolls and all of the other great breakfast items. We checked out of the hotel, loaded up the kids
and headed back to Rochelle and Scott’s house.
Scott and Josh stayed with the kids at the house and
the four of us loaded up in the truck and headed for Omaha. The ride was very quiet. I remember trying to fill the quietness with
a comment on how good Dad’s driving was.
He used to despise city driving but unfortunately he had gotten well
acquainted with the city thanks to all of the trips to and from the University
of Nebraska Medical Center. We made
small talk to the appointment.
As we pulled up to the University of Nebraska
Medical Center, I had another déjà vu moment.
The campus had changed quite a bit since the last time I was there
(1994) but as we pulled up the feelings came rushing back except this time I
knew what we were walking into. When we
visited the UNMC in 1994 I was 11 and Rochelle was 13. A lot of memories that I thought had vanished
came rushing back. I stood there for a
moment trying to comprehend what was going on.
We found a wheelchair for Mom and valet parking took care of our truck.
Ro did not miss a beat. She got behind the wheelchair and started
navigating our way through the large medical center. I am normally a fast walker but I could not
seem to keep up. I was trailing behind
trying to get the tears out of my eyes.
It was a sad scene. Obviously we
were in a medical center so of course there were a lot of sick people. I had tunnel vision on Mom in the wheelchair
in front of me. I saw other sick people,
adults, children, white, black—every walk of life. For a split second, I had a flashback of
walking though the airport trying to find our gate so we would not miss our
flight. I then snapped out of it and
remembered we were in the cancer center looking for Dr. Reed’s office so we
could hear Mom’s fate.
We got checked in and had a hard time to find a
place to sit. It was a fairly large
waiting room and it was full—full of people with cancer and supportive family
members. I had so much anxiety sitting
in the waiting room that I excused myself and went to the restroom. I received a text from my good friend
Lucy. She told me she was praying for
our family. I responded by thanking her
and telling her “we need a miracle.”
Mom’s name was called and we walked down the long
hallway. It seemed like the longest walk
of my life. We were put in one of the
rooms at the very end of the hallway.
The nurse took a brief history and we waited for Dr. Reed. Dr. Reed came in and greeted us. She talked for a short time, asking how we
were doing. Mom was calm and she explained
that her skin seemed to be getting a little better. Dr. Reed knew we were hopeful but I could
tell by the look in her eyes that she had news she did not want to
deliver.
Dr. Reed told us she had a chance to review the
final radiology report and it was not good.
She explained in laymen’s terms that several spots were scattered
throughout her brain and the cancer also had made its way into the sac that
protects the brain. She further
explained the sac around our brain is constantly being “washed” by spinal
fluid. The spinal fluid runs circular
from the brain, through the spinal cord and back to the brain. The cancer cells would eventually make their
way to her spinal cord and ultimately take over her body. I remember her saying, “Nancy, the tumor from
the beginning was a bad actor.” We
asked about the treatment options for a cure and she told us this could not be
cured. We had an option to put a port in
her brain and run chemo through her brain but when asked what the success rate
was, Dr. Reed reported 0% with her patients.
Mom spoke up and said she wanted quality
of life therefore we declined the treatment. This led us to the next
question—prognosis. I dreaded to hear
what she was going to say. I prayed so
hard for one year and I was hopeful we could have at least one more year with
Mom. Dr. Reed estimated Mom had 1 year
to live. Once again life is a matter of
perspective. I was so excited to hear
Mom had one year! In that moment, I was
sad but I felt a sense of calmness. I
felt as if my prayer had been answered.
Dr. Reed referred us to the radiology oncology department. We left the clinic and started our way
towards the radiology oncology department.
We stopped at the restroom on the way.
Mom and Rochelle were in the restroom and Dad and I were in the
hall. We shed some tears. I knew Dad was crumbling but he is/was so
strong and brave. He said, “We have to
be strong for Mom. It’s all going to be
okay.” I remember seeing people pass by
us in the hall as we were crying. I am
sure a majority of them had been in similar situations in the past. We made our way to the cafeteria before the
next appointment. Mom ate broccoli
cheese soup and the rest of us had a salad.
As we were sitting in the waiting room of radiology
oncology, Mom told us to find the business card in her purse for the genetic
counselor. Mom insisted we meet with her
genetic counselor and get tested for BRCA2.
Despite Mom’s grim situation, she was looking for Rochelle and I. Mom and Dad continued to wait for her appointment
in the radiology department and Rochelle and I went to the genetic counselor to
get tested for BRCA2. We met with the
genetic counselor and she answered all of our questions. At the end of the appointment, the nurse came
in and drew our blood. We were told we
would be advised of the results within a couple of weeks.
Once we finished up with at the genetics office, we
went back to the medical center to meet up with Mom and Dad. We met them in the lobby. Mom was sitting in her wheelchair holding a
large plastic mask. She was fitted for a
mask for her face and head so she could start full brain radiation the
following day. She was scheduled to have
a total of 13 treatments. The radiology
oncologist confirmed the diagnosis and agreed with the prognosis of 1
year. He was a little more open about it
indicating he did not expect her to live for one year. The goal of the radiation was to help
lessen/control her dizziness and headaches.
The doctor reiterated this is simply treatment as opposed to a
cure. Mom was so brave!
We talked for a short time in the lobby and decided
it was time to head home so we could be ready for work on Wednesday. It was so incredibly hard to get in the car
and head for home. I wanted to be there
with my family but I knew we needed to get back. My boss is amazing! I called him as we were leaving to report the
sad news. He did not hesitate and he
told me to do whatever I needed to do.
He was very caring and understanding of our situation and I will forever
be grateful!
Rochelle, Mom and Dad trekked back through the
facility to their truck. They went back
to Gretna and spent the night so Mom could be ready for her first radiation
appointment the following day (Wednesday).
Below is a summary of the report from Dr. Reed dated
September 4, 2012:
SUBJECTIVE- Patient
progressively dizzy with poor gait, headache and nausea particularly in the
mornings. Husband started driving her to
work. Called Friday with symptoms and
patient was evaluated with MRI. She was
treated with dexamethasone, meclizine and Zofran and she feels much better with
a resolution of headaches and nausea and improvement in dizziness. She was also found to be BRCA2 positive and
would like her daughters to be tested.
PHYSICAL EXAM-
Neck
not very swollen today. Rashes more
extensive. It is interesting in the
areas where it started, it is paler and is not as thick but in the new areas it
is quite purplish and thickened and in the new areas she is having the start of
another new area on her upper right abdomen.
She has cleared down her arm and there are fairly new areas the mid
back.
I
did not test gait and stance. Her
husband states she is very unsteady and they used a wheelchair.
ASSESMENT- New brain and
leptomeningeal metastatic breast cancer, triple negative. Although not much edema on CT brain, she has
had improvement on decadron (medication). Discussed for an hour the poor
prognosis of leptomeningeal disease.
Discussed intrathecal therapy as well as brain radiation and
craniospinal radiation
The
patient’s chest wall disease seems fairly chemo-refractory and I do not think
she would benefit from intrathecal therapy.
I did refer them to Dr. Enke to discuss radiation options. I also discussed the poor prognosis and
possible choices of comfort care and hospice.
They would like to try radiation and then reassess after radiation the
role of chemotherapy for disease outside the brain.
PLAN- We consulted radiation. We contacted wen Reiser to counsel Nancy’s
daughters who are both here today for genetic testing. We refilled decadron and meclizine and I
wrote a letter documenting disability.
DIAGNOSIS- 1) 18 years ago
the patient had a high risk left sided breast cancer that was treated with
chemotherapy and was followed by high dose chemotherapy and a stem cell
transplant. She remained disease free
from her left sided breast cancer. 2) IN 2010 she presented with a large right
sided breast cancer and adenopathy. We
treated her with chemotherapy and she had nice clinical response. The tumor was triple negative and although
she had what looked like a nice clinical response at surgery, she had a number
of positive nodes. She went on to
receive chest wall radiation. 3) About 1
year after end of her right sided chest wall radiation in March 2012, she
presented with chest wall rash that extended from the clavicle down into the
lower ribs and a couple spots on her back.
She was treated with oral chemo and had a complete response within the
first cycle of therapy. However, by July
2012 she had progressed with chest and back as well as arm lesions. She has had progressive disease on her back,
chest and arm after two cycles. 4) MRI
of the brain done 8/31 shows multiple small lesions both hemispheres as well as
leptomeningeal disease.
Below are the lyrics and a link to the song “My Help Comes from The Lord” by The Museum
When sorrows come and
hope seems gone
You're the rock I rest upon
When waters rise and I can't breathe
You're the love that rescues me
Out of the darkness I lift up my eyes
Unto the hills I feel my faith rise
Maker of heaven, giver of life
You are my strength my song in the night My refuge my shelter Now and forevermore My help comes from the Lord
When I'm broken scarred by sin
Death gives way to life again
When I suffer when I doubt
In you I'm free in you I'm found
Maker of heaven, giver of life
You are my strength
You're my refuge
Now and forevermore...
You're the rock I rest upon
When waters rise and I can't breathe
You're the love that rescues me
Out of the darkness I lift up my eyes
Unto the hills I feel my faith rise
Maker of heaven, giver of life
You are my strength my song in the night My refuge my shelter Now and forevermore My help comes from the Lord
When I'm broken scarred by sin
Death gives way to life again
When I suffer when I doubt
In you I'm free in you I'm found
Maker of heaven, giver of life
You are my strength
You're my refuge
Now and forevermore...
No comments:
Post a Comment