Terminal Diagnosis

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 7^th 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...

http://www.youtube.com/watch?v=ZKB9gcKkXN4&feature=kp

The Calm Before the (Ultimate) Storm

The early months of 2012 brought some unwelcomed news but we were learning to deal with the “new norm.”  Dad healed well from his surgery and Mom was getting favorable results from her oral chemo.  I always enjoyed receiving calls, texts and emails during the day from Mom.  It was so refreshing to hear good news when I would ask Mom how her “rash” was doing.  The oral chemo seemed to be taking control and life seemed to be getting back on track.  Mom continued to follow up in Omaha and her doctors were pleased with the results. 

Mom and Dad planned a quick trip to Minnesota in June with some good friends.  They had the trip planned for a couple of months.  It was a big deal to get Dad away from the farm during the summer months so they had to make the most of their trip.  In the meantime, Rochelle’s C-section was scheduled for June 22, 2012.  Josh, Bryson, Holden and I arranged to stay with Anisten while Rochelle and Scott were at the hospital.   On the morning of June 22 we were heading to the zoo to pass time and to distract Anisten from being away from her mom and dad.  I called Mom on her cell phone to see where they were in their adventure.  I was excited when we found out they were literally a mile ahead of us on I-80.  We arranged a quick meeting with them at a gas station so they could re-fuel and head north.  Everything seemed well and I remember commenting to Mom how good she looked.  She had on a new shirt and it was very flattering on her.   We literally said “hi” and “see you later” all in about 10 minutes.  The group planned on stopping in Omaha on their way back so they could meet Kardyn.

A couple days later we all met back at the hospital before Rochelle and Kardyn got discharged.  Despite the fact they were exhausted from their road trip, everyone seemed fine.  We hung out at the hospital for a short time and then we all went our separate ways so the new family of four could adjust.  

It was hard to believe the summer was already half over.  We were busy with fun in the activities.  Bryson was finishing up his first year of T-ball and we were busy meeting ourselves coming and going.  I love how spontaneous Mom was.  She called me on a Friday in July to let me know she and Dad were kicking around the idea of coming to Olathe to watch Bryson play T-ball.  It was a rare occasion to get together in the summer so this was a really special moment.  It was a very hot, dry summer so they knew they could not stay away from the farm for any length of time.  They left Indianola before 5:00 a.m. to make the noon game.  We met up at the baseball fields and we literally “soaked in the sun” during the game.  It was the hottest day of the year—110 degrees!  We enjoyed the game but we were happy when it was over so we could cool off.  We spent a little time at our house and then they headed back to Indianola so they could tend to the pivots.  Little did I know, that would be the last “normal” get together we would have as a family.  

Rochelle, Scott and the girls spent a few days at the Great Wolf Lodge.  We enjoyed the water park and evenings at the Legends.  After their three night stay, they packed up and went to Indianola to spend time at the farm.  I think Rochelle gets her spontaneity from Mom.    Rochelle and Scott are always very busy traveling to spend time with family.   Not to mention, they have a lot more confidence in their newborn babies traveling than I had in ours.  Anisten was only 8 days old when they traveled to Olathe to spend Christmas with us in 2008.  Kardyn was only 3 weeks when they traveled to the Great Wolf Lodge and to Indianola.  

Rochelle and Scott spent several days at the farm.  Unbeknownst to me, Mom was starting to have problems with redness on her chest again.  She had been doing well until early July.  Mom asked Rochelle to look at the red “spots” that were starting to appear on her chest and back.  Dad noticed redness on her back when he was helping her with her daily exercises at home.  Mom also mentioned that she was waking up with headaches during the night.  She had been on a steady diet of Tylenol to help with the pain.  Mom was fearful that the cancer in her skin was reemerging so she called her doctor the following week.  As a result of the recurrence, her oral chemo meds were increased. 

I was oblivious to the physical problems Mom was facing.  I did, however, notice that Mom and I were not talking on the phone near as often as we used to.  In the past, we would talk at least one time a day, if not more.  We would also email and text throughout the day.  She was a lot slower to respond to my emails and sometimes she did not respond at all.  At one point, I found myself being a little upset with Mom.  It seemed as if she did not want to talk to me.  I could tell she was not fully engaged in our conversations and she would almost cut me off and end the call. I had a feeling deep down that something was not right but I attributed it to the change in her meds.  I found myself getting into a bit of a game to help calm my nerves.  I would send an email first thing in the morning from work in hopes of a quick response.  If she would respond fairly quickly, I knew she was having a good day.  

Every time I would pick up the phone, I was hoping Mom’s chipper voice would be on the other end reporting that the oral meds were working.  It got to the point where I really did not ask about it because I could tell things were not clearing up like she hoped.  Up until this point, Mom did a great job of concealing her feelings with regard to her health, however, I started slowly picking up on the fact something was terribly wrong.  I remember one morning in early August (2012) I called her to see if we could get together.  I really wanted to see her to reassure myself she was doing fine.  In the past, Mom would have jumped on the opportunity and would have done anything to rearrange her schedule.  Her response to my request to get together was, “Honey, I don’t think I can beat it this time.”  What?  I felt so numb when I heard this.  I asked her what she said.  She realized what she had said and she tried to correct herself by saying she simply did not have the energy and she really needed to focus on getting the redness cleared up.  At that point, I finally asked how it was doing.   I could sense the fear and sadness in her voice.  She told me that the new dose of medication was not touching the redness.  She also reported that her hair was very thin and her lymphedema was starting to take a toll on her both physically and mentally.   This was a turning point for me.  I knew there was more to the situation than Mom was letting onto, however, the fact she admitted she was tired and “not sure she could beat it” made me very scared an uneasy. 

I feel as if my life changed forever on that day.  I started letting my mind go deeper to the thought of losing Mom.  I tried to imagine our lives without Mom and I couldn’t do it.  I told myself “this too shall pass.”  Mom was a fighter and honestly, I was naïve and refused to believe that she would let the cancer get the best of her.  I could not imagine life without Mom therefore I refused to believe how bad the situation was getting—DENIAL.  Mom showed us how to find the positives in negative situations and I knew it was my turn to be supportive and encouraging for Mom.  I could tell Mom was unable to find the positives.  She seemed negative and when I would try to offer support, she really never reassured me things were going to be okay.  I started reading between the lines and could tell Mom was physically and mentally tired. 

A few days passed and I could not get the prior conversation out of my head about Mom admitting she was tired and worn out.  I continued my emailing game from work and there were a few days where I did not hear from her.  That evening, we were at home and Holden slightly dislocated his elbow (also known as “nurse maid elbow”).  We went to an Urgent Care clinic and waited our turn in line.  I was feeling a whole range of emotions.  I was concerned because I hadn’t heard from Mom or Dad for a few days.  My motto used to be, “ignorance is bliss” but this theory was no longer working for me.  I had been looking for an excuse to call Mom to see how she was doing.  I felt bad for Holden but I took the opportunity to call Mom to let her know what we were up to.  Once again she really would not engage me in conversation and she made yet another comment about her health.  I do not remember what she said verbatim but it was a negative conversation.  She reiterated how tired she was and how much she hated her hair due to how thin it was getting.  She also made a comment about how it was her turn to be negative and honest about her feelings.  She told me she stayed home from work the last couple of days because she just wasn’t feeling well.  I tried my best to cheer her on but I could tell she wasn’t having it.  I selfishly hoped the conversation would have gone well and I could turn my focus to Holden’s elbow.  Unfortunately, I felt much worse after the conversation and this confirmed my fear that something was wrong.   

Mom always said I have a nose like a bloodhound.  I could sense when things were off.  I like to refer to it as persistence!  The next day I emailed her at work and she responded!  She told me that Dad drove her to work that day because she still was not feeling well.  This struck me as odd.  I knew Mom was resilient so it was a strange concept that she would not drive herself to work.  I later learned that she was dizzy and was not able to drive.  That evening, I remember telling Josh about all of the things that had been going on with Mom.  I made the concerning comment to Josh, “What if the cancer went to her brain?”  I felt as if I were in a dream when those words came out of my mouth.  I tried to convince myself that she was having side effects from the increased dose of her chemo meds.  I felt comforted that she was on chemo so in my mind it was impossible the cancer could be attacking her brain.  I remember wiping the tears from my eyes, saying a prayer and going to sleep.  

On August 8, 2012 I received a voicemail from Mom at work.  She sounded so good.  I had not heard this side of Mom in what seemed like months.  “Hi sweetheart it’s Mom.  I thought today might be one of your late days so I was just calling to see how your day was going.  Love ya and I will talk to you later. Bye bye.”  I saved her voicemail and continued to check the remainder of my voicemails. 

The summer was starting to draw to an end.  I gathered the boys for one final trip to the neighborhood swimming pool.  We had such a fun time.  On one hand it was sad to see the summer come to an end but on the other hand, I was anxious to get Mom back on track and start living again.  I was very excited when my phone rang and it was Mom on the other end.  I was in the process of getting the boys out of the pool and dressed so we could go home for supper.  I could tell they were in the pickup and I was on speaker phone.  Dad did most of the talking but Mom chimed in too.  I told them we were at the pool and were getting ready to go home.  They reported Dad had just picked up Mom from work and they were going home.  I was a little confused because I thought it was a one-time thing when Dad took Mom to work but regardless I was so thankful to finally hear from them.  We were talking about the weather and how hot it was.  I specifically remember Mom saying (in a very slow, long, drawn out voice), “Well, it has to rain sometime.”  I agreed and responded by saying it will rain when God decides it is time.  Mom reported that she had a really good day.  In fact, she said it was one of her better days in a very long time.  I felt pretty good about the call but I was a little bothered by Mom’s slow speech.  We talked a few more minutes and we ended the call by confirming we would see each other that weekend (August 21, 2012) for Kardyn’s baptism. 

Rather than going to Gretna on Friday, they decided to wait until Saturday morning to leave.  Dad wanted to turn the pivots off before they left home.  I spoke with Rochelle that evening and she told me Mom and Dad were going to stay at a hotel rather than their house.  This was hard for me to understand.  Mom and Dad always stayed at our houses, not a hotel. 

That Saturday, we were expecting Mom and Dad to arrive in Gretna at a decent time.  We knew it was going to be a quick weekend so we wanted to get in as much visiting as possible.  The morning turned into early afternoon and we had not heard from them.  Rochelle called and they were just outside of Lincoln.  They said they stopped in Arapahoe and they were there longer than they expected.  When they finally arrived, Mom seemed a little out of sorts.  She told us that she had an incident that morning when she went to get out of the truck.  She said her legs felt like they “stopped working” and she fell into Doug.  This concerned me greatly but once again I attributed it to the increase in her oral chemo.  I vaguely remember Rochelle (an ortho/neuro nurse) expressing concern.  She sees this type of symptoms on the floor quite frequently so clearly Mom’s symptoms caused great concern.  Mom looked tired and she just did not seem like herself.  The rest of the day went on as “normal” as it could but there was definitely a grey cloud looming over our heads.  

The next morning we attended church and the baptism followed.  Mom and Dad stayed at the hotel that night so we met up with them at church.  I felt the tears building up in my eyes when Mom and Dad walked into church.  Mom seemed to be clinging onto Dad as they walked in and found a seat.  I prayed so hard that Mom would bounce out of whatever was going on but I couldn’t help but notice the downward spiral she was in.  I had a really hard time when it was time to start packing up.  All of the signs were pointing in the direction that something was very wrong however I refused to believe there was something wrong—DENIAL.  I tried to think positive but it is also hard to ignore your gut instincts.  I remember holding back the tears most of the way home.  I told Josh that I had a bad feeling something was wrong.  I couldn’t grasp the magnitude of the situation but I knew it was not normal for her legs to quit working.  Mom had a difficult time going up and down the stairs at Ro and Scott’s house.  I followed her up and down the stairs both times and I couldn’t help but notice how out of breath she was.  She also mentioned her appetite was not very good.  She mentioned she felt very nauseous after attempting to eat an English muffin at the hotel on Sunday morning of the baptism.  

I am deeply saddened to post the pictures below (and I am sure Mom would not be happy with me but it is part of our story).  It is clear from the pictures she did not feel well--she looked very tired and worn out.  It was hard to see how quickly Mom went down hill from when we saw her that hot day in July at the t-ball game to a month later at Kardyn’s baptism.  Bryson took the close up picture of Mom and Dad.  I clearly remember him taking the picture.  I tried to hold back the tears as he was taking it because I was thinking "I want to get as many pictures of Mom and Dad as we can because we may not be presented with many more opportunities."  These thoughts were starting to come more frequently and I was starting to enter into the territory of “not if but when” and accepting that I just might have to starting imagining life without Mom.  It seemed impossible yet a reality.

I got home that night and cried in the shower.  I did not want the boys to see me upset so I took an extra-long shower so I could cry as long as I needed to.  The thought of Mom being sick really bothered me and it consumed a lot of my day.  I found myself not being very focused both at work and at home.  I wanted things to be normal and I wanted to hear from Mom that she bounced back and was doing well.  Unfortunately, I never received the reassurance from Mom that she was doing fine.  I continued to follow up with her daily but some days my emails and calls were returned yet more times than not, I did not hear back from Mom. 

I knew that whatever was going on was in God’s hands and we had to trust Him.  I didn’t like the way the things were going and I wanted to change the story but I realized it is not my story to write.  I trusted God to see us through this situation even though it was far from the ideal earthly situation.  I found myself internally saying, “it is what it is.”  I was sickened by the thought of Mom being ill again but I also knew that I could not fix the situation nor could I control what was going to happen.  It is hard to let go but at the same time it is hard to fixate on things that cannot be changed.  I knew we had to stick together and be strong for Mom.  It was time for her to retire her cheer leading outfit and pom-poms and we needed to step up and encourage her through whatever challenges she was facing and had yet to face.  Never once during this time was I angry at God.  I found myself leaning on Him even more to help guide us through the storm.  I accepted God's will and tried to find peace with the situation. 

Below are the lyrics and a link to “Help Me Find It” by Sidewalk Prophets

I don't know where to go from here
It all used to seem so clear
I'm finding I can't do this on my own

I don't know where to go from here
As long as I know that You are near
I'm done fighting
I'm finally letting go

I will trust in You
You've never failed before
I will trust in You

(Chorus )
If there's a road I should walk
Help me find it
If I need to be still
Give me peace for the moment
Whatever Your will
Whatever Your will
Can You help me find it

Can You help me find it

I'm giving You fear and You give faith
I giving You doubt
You give me grace
For every step I've never been alone

Even when it hurts, You'll have Your way
Even in the valley I will say
With every breath
You've never let me go

I will wait for You
You've never failed before
I will wait for You

Chorus

I lift my empty hands (come fill me up again)
Have Your way my King (I give my all to You)
I lift my eyes again (Was blind but now I see)
‘Cause You are all I need

http://www.youtube.com/watch?v=CsjZ94K7UQs