Mom had a follow up appointment with Dr. Reed on
Friday, September 28, 2012. Rochelle was
working so Dad and I took Mom to the appointment. We went to the same facility where Mom
underwent full brain radiation. It was
hard returning to the facility because we did not know what Dr. Reed was going
to say. When we received Mom’s terminal
diagnosis, Dr. Reed mentioned the possibility of starting chemo for Mom’s skin
after she completed the 13 rounds of radiation for her brain. Rochelle, Dad and I discussed whether or not
we felt the chemo was necessary. Barring
a miracle, we had come to terms that Mom was not going to beat the battle this
time. Dad knew there was no way Dr. Reed
would start chemo given Mom’s state of health.
Rochelle would ask Mom on certain occasions whether or not she wanted to
undergo chemo and Mom never gave us a definitive answer. I am not sure if it was because she lost the
ability to make a decision or if it was because she knew there was no
point. Right after Mom was diagnosed, she
emphasized she wanted quality of
life, not quantity.
During the appointment we reviewed Mom’s medication
list with the nurse and discussed her health.
I was sad during the appointment because Mom tried so hard to convince
the nurse that her skin was doing better but it was obvious it was not. Her skin had gotten so much worse over the
course of the month. Dad spent several
hours both day and night rubbing Sarna lotion on Mom’s burning skin to soothe
her. At one point Mom told me she could handle the dizziness and headaches but
the burning and itching were driving her “over the edge”. At that point the purplish colored rash was spreading
with a vengeance. The cancer in her skin
covered the right side of her chest, arms and back.
I was heartbroken during the appointment because
Mom was struggling with her words. For the
most part, she would track very well but there were days when she could not find
the right words. It was frustrating for
her because she recognized when the right words would not come out. One example was when she was in the
shower. She told Rochelle to make sure to
wash her shoes when she really meant feet.
Most of the time when she was having trouble finding the right words,
she would get close enough that we would know what she was talking about. At the doctor’s office on September 28th
Mom was trying to refer to me in the sentence and she looked right at me and I
knew she could not think of my name. She
stumbled and finally said, “…my daughter…”
I felt that similar pit in the bottom of my stomach but continued to
smile and help her continue to try to find her words.
Dr. Reed and her assistant came in and spent some
time talking and examining Mom. The
radiation made some of Mom’s hair fall out.
Mom was not concerned with her looks. We all knew she was as beautiful as ever and
we continued to remind her of that. She
had a variety of cute hats to wear to her appointments and she definitely rocked
them! While at home, she would not wear
a hat. Her hair was very thin and patchy
but she did not want to shave her head.
We asked her a couple of times if she would like us to trim her hair and
she always said no. Dr. Reed wrote an
order for a “cranial prosthesis for chemotherapy/radiation induced
alopecia”(also known as a wig to the general public). Dr. Reed did not bring up the idea of
starting chemo during the office visit.
I continued to keep my BRCA2 status quiet because I
did not feel that bringing it up during this time was going to accomplish
anything except unnecessary worry and increased anxiety. I had already made my decision to not share
the news until after Mom passed away but it is so much easier to tell the
truth. I wish the circumstances were
different and I would have been able to be open about my results but the
reality of it was, I could not break Mom’s heart knowing I carried the mutated
gene. I was paranoid that my BRCA2
status would be brought up during Mom’s appointments because I had my genetic
testing done at the University of Nebraska Medical Center. Dr. Reed was very professional and she did
not ask about it during the appointment.
After she wrote the order for the wig and existed the exam room, I
literally chased her down the hallway. I
told Dad I needed to ask Dr. Reed a question about the order she had just
written when in fact, I wanted to share the results of my test with Dr. Reed. I asked to speak to her in a room so our
conversation would not be overheard. Dad
had perfected the art of getting things packed up and ready after the
appointment so I knew I had to get straight to the point. I told Dr. Reed I tested positive for BRCA2
and her response was, “I was wondering.
Does your Dad know?” When I told
her my decision to not share the news with my family until the right time, she
agreed and supported me 100%. She told
me Dad would be “devastated” when he found out but she agreed not to overload
him with this information. I thanked her
for her time and got back to the room to find Mom and Dad patiently waiting for
me. Mom had another scheduled
appointment with Dr. Reed on October 12, 2012.
We did not know it at the time but Mom would not be well enough to make
the appointment on October 12, 2012.
Once again we put two and two together after Mom
passed away. Dad believes Mom wanted to
see Dr. Reed one final time. Mom and
Dr. Reed had a 19 year history and Mom wanted to see her. Mom knew she did not want to start chemo for
her skin and she knew Dr. Reed would not order it. There was no point. Mom’s wishes were “quality over quantity”
when she received her terminal diagnosis.
It all makes sense now!
Each passing day became more challenging but we all
stuck together and made it work. I
recently saw a post on Facebook that touched my heart and is very fitting. “Faith—it’s
all about believing. You don’t know how
it will happen but you know it will.”
We knew God had this situation under control and we had to have faith
that he would see us through it. We
faced each hurdle as it presented itself and we moved on. As the days passed, Mom would spend a vast
majority of the day sleeping. She started eating and drinking less. She would wake up for her pain pills and she
would visit for a while but she was worn out.
She would finish a conversation and would end it by saying, “I’m going
to take a nap.” She laid back in the
recliner and would nap. Occasionally she
would sleep talk. We tried to make sense
of it but most of the time it was jumbled.
When Mom was terminally diagnosed, one of her worst fears was “losing
her mind.” I estimate that Mom was able
to track approximately 90% of the time. God
performed another miracle by allowing her to be mentally active and engaging
most of the time during her final days on earth.
As previously mentioned, Mom wanted to go to bed at
7:30 every night. She could wake up from a deep sleep
at it would be very close to 7:30 and she would announce she was ready for
bed. Dad playfully rolled his eyes but
obliged. We would help her out of the
recliner and to her walker. We had a
system where we would get her to the edge of the recliner and would count,
“1…2…” and when we got to “3” that was the signal for Mom to stand and for us
to pull under her arms and help her out of the chair. It is the little things that kept us
going. Once again you had to be there to
laugh at and fully appreciate this upcoming story but we got a kick out of
it. One evening, we were all in the
living room and it was 7:30 which meant Mom was ready for bed. She was on the edge of the recliner and we
were getting ready to count. Rochelle and Dad
were counting in sync, but then Anisten chimed in and was counting at her own
pace. Mom was also counting to her own beat. It was so confusing to have so
many counters that we lost track. We
were laughing so hard we had to give ourselves time to regroup before
we could try again. Mom joined in on the
laughter too. I have learned you have to
make the most out of the situations you are in.
Each night we would tuck her in bed a tear would
roll down her cheek. It was becoming
increasingly difficult to get Mom down the stairs and into the bed. There were times Mom would say, “I don’t want
to do this anymore.” She was tired and
worn out and knowing Mom, she was hurting a lot more than she was letting us
know. We continued to encourage her and
make her as comfortable as possible. We
had to make sure she was near the edge of the bed so we could get her up and
down during the night to the restroom.
All of her pillows were tucked in the right places and her meds were
down.
When our family would stay, Josh and I slept on an
air mattress in the living room in the basement and the boys would sleep on the
futon in the office. We were there to
help with getting Mom to and from the restroom during the night. We slept with our ears open to make sure we
were there when we were needed. I could
sense when the light was turned on in the adjacent bedroom. I would go into the bedroom to help get Mom
out of bed and to the restroom. Her
walker had some blue plastic pieces on the front. During one of the nights the walker rubbed against the
wall in front of the toilet and left a small blue smudge on the bathroom
wall. Rochelle said she is never going
to paint over the smudge. When we visit
I think of Mom and smile when I see the blue mark on the wall.
Saturday, October 6, 2012 started out like every
other day (for the last 35 days) except Mom did not want to go upstairs. She took her time getting from the bedroom to
the recliner in the basement. When we
told her it was time to get upstairs to take a shower she said she did not want
to. She drank her hot tea and watched
the local news. It was a nice change of
pace to not struggle with the dreaded stairs.
Later on that morning, we received a call from a group of great
friends. They asked if Mom was up for
company and when we asked Mom, she declined.
She had some very restless nights and she wasn’t tracking as well as she
had. We felt she needed her sleep and
visiting was going to be too much for her.
I was upstairs making tacos when the doorbell rang. Our friends decided to come see Mom because
that is the kind of friends they are!
They were very concerned and they felt the need to see Mom. The day went really well and Mom enjoyed the
visit. The women spent time in the
basement and the men were upstairs. At
one point during the conversation, Mom looked at me and asked, “I’m not
tracking am I?” I told her we knew what
she meant, which we did, and we moved on.
The group decided to leave for lunch and to do some shopping. They planned on bringing supper back before
they left for home. Shortly after they
left, we could tell something was on Mom’s mind. She finally let us know that she was not up
for company that evening. We feel as if
Mom knew she saw her friends for the last time when they were there visiting
and she did not have the emotional strength to say “Good Bye” one final
time.
The night of October 6, 2012 was Mom’s worst night
during her illness. The wonderful staff
through the VNA did their best to meet Mom’s needs. Her needs were always changing due to the
progression of the disease therefore her medications were always changing. We were frequent flyers at Gretna drug due to
the amount of medications Mom was requiring.
The nurse practitioner gave us some Ativan to try along with a sleeping
pill. She told us to start with one and
if that does not work that it was okay to give her a second dose.
Dad and Mom were in bed by 7:30 and Rochelle, Scott,
Josh, myself and the kids were in the basement watching TV. We thought we got Mom tucked in bed and
comfortable but we kept noticing the light turning on and off from the crack
under the door. Rochelle and I went into
the room to see what was going on. Dad
said Mom was very restless but Mom could not express what the problem was. She was moving a lot and was talking in ways
we could not understand. Dad needed a
break so Rochelle and I tried to settle Mom down. She kept asking us for help and begging us to
get her out of the room. She looked at
us with eyes like I have never seen.
This was very unusual behavior for Mom but we tried to understand and
make her as comfortable as possible. She
continued to beg us to get her “out of here!”
We could not talk her out of it so we got her out of bed and to the
recliner in the basement living room.
Once we got her settled in the recliner she started up with the same
requests and behavior. She tried to
throw the blanket off of her and told us she had to go. “I have to go. I have to get out of here” she
would say as she was kicking her legs and moving her feet. She seemed extremely panicked. She begged us for help and to “get me out of
here!” This went on and on to the point
we decided to give her another dose of Ativan, per the nurse practitioner’s
instructions, in order to calm her down.
After a couple of trips between the two rooms she could not walk because
she had worn herself out. We used the office
chair as a makeshift wheelchair to get Mom around the rest of the night. The night seemed like it was never going to
end. We finally got her to calm down and
to sleep around 3:30 a.m. I slept on the
floor in the bedroom from 3:30 on in order to be there should this behavior
continue.
Around midnight that night, during the height of the
unusual behavior, Dad told us he was going to go to the hospice facility he had
previously arranged. He knew there was
no way we could continue to provide for Mom the way she deserved to be cared
for considering her new onset of symptoms.
It was emotionally painful to make the decision to admit Mom to the
hospice facility because Mom made it clear early on she did not want to die at
a facility if at all possible. She was
more comfortable in Rochelle and Scott’s home but we knew she would understood
if we needed additional assistance from professionals.
That morning, Mom woke up around 9:00 and her eyes
were glassy. We got her to the basement
living room and she chose to lay down on the love seat rather than in the
recliner. She was still not making a
whole lot of sense but she was not acting as if she was scared and wanted out
of wherever she had been the night before.
We honestly thought the disease finally overtook her brain. It broke Dad’s heart but he told Mom we were
going to take her to the hospital to get her checked out. I remember going outside to rearrange the
vehicles so we could get Mom into the truck and take her to the hospice
facility. It was freezing cold out! I was not prepared for how cold it was as I
put on my sandals and opted to not take a jacket. As soon as Mom heard the word hospital it was
if she started snapping out of it. She
did not want to go and she worked hard to express this to us by her body
language, not her words. We slowly got
her in the recliner and gave her some breakfast. Little by little Mom was making a
comeback! She started making sense and carrying
on conversations that we could understand.
Later on that morning we concluded Mom was
experiencing delirium from the medications.
During the night we did not know she was having an adverse reaction to
the new combination of medication. We
were fearful the disease had progressed to the point we had all dreaded and
feared the most. The way she was acting
it was if somebody was chasing her and she could not get away fast enough. I cannot imagine the mental torment she went
through for seven hours. She begged us
for help and no matter what we did, she wanted to get out of there faster than before. The look in her eyes is one I will never
forget.
Around mid-afternoon Mom told us she was ready to
make her way to the main floor. We told
her that it was almost evening and we tried to convince her to stay in the
basement. Mom was persistent by making
it very clear she wanted to go upstairs.
She tackled those stairs with determination like I have never seen. It took some time to get her to the top but she
did it! Once she made her way to the
main floor, we got her settled in the recliner.
At one point, she commented how well she rested “last night.” We never gave her any indication that it was
a horrific night. We all just smiled at
one another and moved on.
We decided it was time to gather the troops and
clean the house. We needed a fresh start
to the day considering the night we had.
Mom rested in her chair and Dad tended to her needs and Rochelle, Scott, Josh
and I were ready to clean. There was still frost on the trees and ground and it was sleeting on an
off during the day. The kids were a bit
stir crazy but we could not send them outside to play while we cleaned. We turned on the TV to their favorite channel at that time, Nick Jr. Go
figure—according to Nickelodeon, it was “National Play Outside Day.” Nickelodeon and Nick. Jr. decided not to air
any shows that day and to play a continuous cycle of birds chirping and a clip
letting parents and kids know it was time to take a break from the TV and play
outside! Every year when Nick pulls this
we laugh and reminisce about the timing in 2012.
That evening Mom was very hesitant to go back down
stairs and we were not that excited about going back down. It was easier being on the main floor. In the chance that we would have to take Mom
to an outside facility, it would be easier to get her out of the house. We were thankful she made her way to the main
floor because if her health continued to decline at the pace it was going, it
would be impossible for our family to get her out of the basement. Once again, we think Mom had a plan. She knew she could no longer make her way up
and down the stairs so the determination we saw earlier was her way of letting
us know that was the last time she was going to navigate the stairs. We credit diving intervention as well as Mom's amazing ability to plan.
Rochelle and Scott graciously offered their room to
Mom. Their room was perfect for Mom’s
situation. Mom would no longer have to
go up and down the stairs and the master bedroom set up was very accommodating. Dad was able to watch TV in the evenings when
Mom was sleeping and during the afternoons when Mom was napping. The master bathroom was right there the
living room was within steps of the bedroom.
Rochelle and Scott gathered up their main things from their room and relocated
to the spare bedroom downstairs. Kardyn
stayed in her crib as she was only 3 ½ months old and Anisten stayed in her
bedroom upstairs. When I would visit, I
would sleep on the living room couch so I could help get Mom to the restroom
during the night. During the week, Rochelle would sleep on the couch to help during
the nights. We agreed that this was the
best situation and were so thankful Rochelle and Scott never thought twice about not
only offering their home but giving up their bedroom. We also agreed it was time to call the VNA to
get a wheelchair and other items to help care for Mom and her increasing health
needs.
Sunday, October 7, 2012 a nice couple from the
Gretna Catholic Church came to the house to give Mom communion since she could
not go to church. They are a very neat
couple and we could tell they were genuinely sad for our family. Before they left, we decided to pray the Our
Father with Mom. As we started Mom said,
“Hail Mary full of grace..” so that is what we went with. During Mom’s illness Dad shared with us that
Mom prayed every morning on her way to work.
She enjoyed the peaceful 20 minute praying for both the living and
deceased.
On Sunday afternoon, Mom wanted to nap in the bed
rather than the recliner. As she and Dad
were napping, the kids were playing in the basement and the adults were in the
living room. We were worn out both
physically and emotionally from the previous night. We barely got any sleep and we were saddened
to see Mom in such a state. I will never
forget the conversation we had during Mom’s nap. Rochelle stated that she believed Mom has
started the dying process. Unfortunately
in Rochelle’s line of work, she has experienced this on more than one
occasion. She was tuned into the signs
and her instincts were correct.
Below
are the lyrics and a link to the song “Even If” Kutless
Sometimes all we have to hold on to
Is what we know is true of who You are
So when the heartache hits like a hurricane
That could never change who You are
And we trust in who You are
Even if the healing doesn’t come
And life falls apart
And dreams are still undone
You are God You are good
Forever faithful One
Even if the healing
Even if the healing doesn’t come
Lord we know Your ways are not our ways
So we set our faith in who You are
Even though You reign high above us
You tenderly love us
We know Your heart
And we rest in who You are
Even if the healing doesn’t come
And life falls apart
And dreams are still undone
You are God You are good
Forever faithful One
Even if the healing
Even if the healing doesn’t come
You’re still the Great and Mighty One
We trust You always
You’re working all things for our good
We’ll sing your praise
Is what we know is true of who You are
So when the heartache hits like a hurricane
That could never change who You are
And we trust in who You are
Even if the healing doesn’t come
And life falls apart
And dreams are still undone
You are God You are good
Forever faithful One
Even if the healing
Even if the healing doesn’t come
Lord we know Your ways are not our ways
So we set our faith in who You are
Even though You reign high above us
You tenderly love us
We know Your heart
And we rest in who You are
Even if the healing doesn’t come
And life falls apart
And dreams are still undone
You are God You are good
Forever faithful One
Even if the healing
Even if the healing doesn’t come
You’re still the Great and Mighty One
We trust You always
You’re working all things for our good
We’ll sing your praise
Even if the healing doesn’t come
And life falls apart
And dreams are still undone
You are God You are good
Forever faithful One
Even if the healing
Even if the healing doesn’t come
You are God and we will bless You
As the Good and Faithful One
You are God and we will bless You
Even if the healing doesn’t come
Even if the healing doesn’t come
And life falls apart
And dreams are still undone
You are God You are good
Forever faithful One
Even if the healing
Even if the healing doesn’t come
You are God and we will bless You
As the Good and Faithful One
You are God and we will bless You
Even if the healing doesn’t come
Even if the healing doesn’t come
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