Thursday, September 11, 2014

The First of Many "Firsts"




Monday, October 22, 2012 was my first full day back to work following Mom’s illness and funeral.  I was happy to be back and I was welcomed with open arms from my employer and co-workers.  I was ready to get back to normalcy but I couldn’t help but think of all that had gone on in six short (yet very long) weeks.  I could not believe that Mom was given one year to live but 42 days later we were planning her funeral.  If Mom could have chosen how the end would happen, I think she would have chosen the exact way it happened.  I can still hear Mom say, “If this is all that is left for me on this earth, I don’t want it.”  She was ready to leave this earth despite being sad to leave her family behind.  She knew eternal life was around the corner and she was ready to leave be welcomed to her eternal life.

Typically, I am the first one to arrive at the office.  I work a flex schedule so I can get my eight hours in and get off at a decent time so I can spend the afternoon with our kids.  I remember my first morning back at the office. As I was going through my emails I swear I heard in a loud whisper, “Kirby!”  I sat there wondering if my mind was playing tricks on me.  A few seconds later I heard again, “Kirby!”  I quickly turned to my left where I heard the sound and of course nothing was there.  I continued on with my work and I did not hear anything else.  I continued to have some nightmares so I attributed the sounds to sleep deprivation.   Later on that week an email popped up from “Nanci Schmidt.”  The email caught me by surprise.  Obviously the email was not from Mom but it was from a paralegal on a case I was working on.   Regardless, the sight of Mom’s name (minus the difference in spelling) brought me comfort.  I knew she was with us and the email was a subtle reminder.
Later on my co-workers and boss arrived.  Each and every one of them stopped by my office to offer their condolences and to remind me to speak up and ask for help if I needed it.  They know how independent I am and very seldom do I ask for help in terms of dealing with personal situations.  I couldn’t be more blessed to work for a caring, kind boss as well as work with extraordinary nice people.  My work family is definitely my second family and each and every one holds a special place in my heart. 

In an effort to be proactive with my health, I had made an appointment at the Breast Cancer Prevention Center at the University of Kansas Hospital.  As soon as I found out I was BRCA2+ I made the appointment.  We were told Mom had a year to live so I wanted to take the first available appointment so I could get it out of the way and so I could reassure Mom that I went to the appointment and what the surveillance plan would be (despite the fact she did not know I was BRCA2+).  The first available appointment was October 23, 2012.

It was extremely hard going to my first appointment on October 23rd.  I was not emotionally prepared for the appointment given the fact it was only six days after Mom’s funeral.  The Breast Cancer Prevention Center is located in a cancer center.  Missys’ Boutique is also located in the same facility.  All of the negative feelings came flooding back as soon as I parked and walked in. When I got off the elevator, Missys’ Boutique was right there.  I had a flashback and I could vividly see Mom and I walking around the quaint store just 18 months prior when she was shopping for bras and prosthetics following her mastectomy.  I also saw several people who were very sick.  The sight of wheel chairs, oxygen tanks, face masks, bald heads, etc. made me extremely sad.  It took all I had to keep walking towards the office rather than turning around and leaving.  In fact, as soon as I saw the sign for the Breast Cancer Prevention Center, I stood there and stared at it for a short time.  I strongly considered walking away and never going back. I have a bad habit of making appointments and then cancelling them at the last minute but in this situation, I knew I owed it to Mom to move forward with my appointment.  I made promised Josh I would follow through and I wanted to honor Mom by moving forward with preventative care. 

I pulled myself together and walked into the office.  I was greeted by a very welcoming staff.  As soon as I filled out the paperwork a nurse called me back to the exam room.  I made it two steps down the hall towards the exam room and the tears started flowing.  I hadn’t cried like that in a very long time.  For one, I was terrified of being there and two, all of the emotions of losing Mom just days prior were too raw.  I was still processing the fact Mom was not going to be a phone call away when I was done at the appointment.  I seriously cried the entire time I was there.  I remember apologizing over and over because of the way I was acting.  The staff was very understanding and they reassured me I was doing the right thing by taking the first step in being proactive. 
The main doctor and the physician assistant came in shortly thereafter and once again, I started crying.  We reviewed Mom’s history with breast cancer and I shared with them she had just passed away 10 days prior.  The doctor did a breast exam and reassured me everything was normal.  Her recommendation was to have a baseline mammogram and to continue with surveillance every six months.  Surveillance includes a physical exam and a rotation of mammograms, MRIs and ultrasounds every six months.  A mammogram is important, however, the MRI is more sensitive and it typically picks up things that a mammogram cannot.  The same is true with ultrasounds.  Each test is beneficial and high risk women are encouraged to undergo an intense surveillance plan.  Some women chose to undergo surveillance while others chose surgery. 

I felt a huge sense of relief once the physical exam was over and once I understood what the surveillance program entailed.  I got dressed and she asked me to meet her in the consultation room so I could undergo a risk assessment.  We met in the consultation room and I told her I would hear her out but I “have already made up my mind.”  She wanted to talk about several clinical studies as well as the surveillance regimen.  Josh and I agreed we wanted to have one more child and then I would undergo a prophylactic bilateral mastectomy with reconstruction.  Given Mom’s strong history and early diagnosis at the age of 36, I was not willing to have anxiety every 6 months until cancer was found.   I told her that breast cancer destroyed our family once, therefore I was willing to take extreme measures to ensure this would never happen again.  

The doctor understood and gave me her recommendation.  She wanted me to have a baseline mammogram and MRI and if both tests came back negative, she would give us her blessing to start trying for baby number 3.  She reassured me that my high risk for breast cancer would really “kick in” at age 30.   Dr. Fabian told me “more times than not, daughters follow in their mother’s footsteps.”  Dr. Fabian agreed with the idea of conceiving another child before I undergo surgery given the fact I was so young.  She mentioned if I were closer to 35-40 years old, she would strongly discourage our plan to try for another baby and she would recommend I move forward with preventative surgery. 

Below is a summary of my records from Dr. Fabian following the October 23, 2012 visit:

“Kirby is a 28 year old premenopausal female who has a BRCA2 mutation. She has a family history of premenopausal breast cancer in her mother, diagnosed at age 36.  She currently has two children and is considering a third.  She was here today in consultation to discuss her options for treatment and surveillance.  She is interested in bilateral prophylactic mastectomy after the birth of her 3rd child.  

Her mother was diagnosed at age 36, recurrence at age 54 (both triple negative disease).  She passed away on October 13, 2012 from metastic disease.  She has been exercising, however, she has not exercised since her mother was diagnosed with metastic disease 6 weeks ago. 
Surveillance for women with BRCA2 should start breast screening at age 25 with twice yearly clinical breast exam and breast MRI in addition to mammography.  In addition, ultrasound with yearly CA125 blood test is advised beginning between the ages of 25-35 and continued until the uterus and ovaries are removed (usually at age 35 or after childbearing has been completed).  A total hysterectomy reduces the risk of ovarian cancer by 95%, however, women who undergo oophorectomy (removal of ovaries) prior to age 45 have an 84% increased risk of fatal cardiovascular events and an increased risk of cognitive impairment as well.  

We gave her the following recommendations: 1) Women with a BRCA 2 mutation have 50-85% risk of breast cancer and a 15-40% chance of ovarian cancer.  This equates to risk for breast cancer of 2% between the ages of 30 and 70 (meaning my risk goes up 2% every year after 30) and 1% for ovarian cancer generally after age 40 (my risk for ovarian cancer goes up 1% every year after 40). 
Kirby could have a bilateral prophylactic mastectomy with reconstruction which would reduce her risk by 95%.  At this point this is what she plans on doing but she thinks that she would like to have another child first.  I have encouraged her to exercise and lose as much weight as possible before this operation.  

Until her breasts are removed we will continue with surveillance.  She will return on 11/12/12 for a screening mammogram and we will plan on getting a bilateral breast MRI within the next couple of months before she becomes pregnant. 

I am embarrassed to admit that my body mass index at that time was well above where it should have been.  Prior to Mom’s terminal illness, I knew I needed to lose weight before we started trying for another baby.  I had lost twenty pounds and by diet and exercise but I am a stress eater.  As soon as we learned of the extent of Mom’s illness, I quit exercising and I ate whatever I wanted, when I wanted.  Given Mom’s strong history with breast cancer, my BRCA2 status and being overweight, my risk assessment indicated I my lifetime risk of breast cancer is 94.5% and my lifetime risk of ovarian cancer is between 40-50%.  

ASSESSMENT- 1) very high risk for the development of breast cancer secondary to BRCA 2 mutation; 2) high risk for the development of ovarian cancer secondary to BRCA 2 mutation.

When I got home that evening I was a little upset by the appointment but I was also reassured.  I see the BRCA “diagnosis” as a curse and a blessing at the same time.  It is very much a curse because it increases your risk for cancer but I also see it as a blessing because doctors pay very close attention to patients with this status and it is considered a diagnosis so insurance pays for the testing and procedures. I was relieved that my first appointment was over, however, I dreaded the mammogram and MRI.  I knew it was something I had to do to honor Mom’s legacy but I also had to do it because I promised Josh I would be proactive so we could live to see our children and grandchildren.  I scheduled my mammogram and MRI for early November and I headed home.

As previously arranged, Dad packed up his bag, along with Tess (his black lab) and they drove to Olathe to spend the week of Halloween with us.  The furthest Tess had been away from the farm was the gas station in Indianola.  We weren’t sure how she would do traveling 6-7 hours.  It was nice knowing Tess was with Dad.  I hated the thought of Dad traveling my himself but Tess served as a great distraction.  Besides that, Bryson and Holden loved the thought of having a dog.  They had been asking for a dog so we told them they could see what it would be like having Tess at our house for a week.  

The weather in October was not typical in 2012.  I remember it being somewhat mild, however, it was nice enough to have the windows open.  After I got home from work, Dad and I sat in the living room talking while the boys played out back with Tess.  They were having fun walking her around on her leash in the back yard.  I was somewhat nervous letting the boys play outside but our backyard is fenced in and we could see them from our living room.   I expressed to Dad how nervous I was about the boys being outside by themselves because of the egress window.  We talked about how much Mom disliked that window in fear of one of the kids falling down inside the window well.  Our intentions were to buy a cover however, after living in the house for 5 years, we failed to do so. 
Dad and I were catching up in the living room and discussing how weird it was that Mom was really gone.  It seemed like she had been gone for a long time but in all actuality, she had only been gone 18 days.  As we were talking I heard a faint cry.  My heart stopped once I realized the distant cry was coming from Holden.  Just then, I heard Bryson’s voice getting closer and closer to our screen door.  “Mom!  Mom!  Holden fell in the window!”  My heart sunk and my adrenaline kicked in high gear! I knew Holden was alive because I could hear him crying but I was terrified to look down into the window well in fear of what we were going to find.  Dad, Bryson and I looked down the 4 ½ foot hole and found Holden laying on his back.  His left leg was bent backward and his head was in between two large boulders.  I jumped down and picked him up.  He was crying but everything seemed to be intact.  I asked him if he was okay and he said yes as he was sobbing.  I think he was more frightened than anything.  

I asked Bryson what happened and he said they were playing with Tess and as Holden was walking backwards with the leash, he stepped right into the uncovered window well.  He fell flat on his back.  We brought Holden inside and looked him over from head to toe.  It gives me the chills to report that Holden walked away without a bruise or a scratch.  As I mentioned earlier, his head landed in between two large rocks.  The large rocks were less than a foot a part from one another.  He could have easily hit his head and broken several bones.  We truly feel Mom, our guardian angel was there and she caught him as he fell.  There is no earthly explanation how he walked away without a single bruise or scratch, head injury and/or broken bones.   Needless to say, the window well is now covered and we have not had any other incidences with it!  Thanks Mom!

My baseline mammogram was scheduled for November 1, 2012.  Once again my nerves got the best of me as I pulled up to the cancer center.  I knew this was something that had to be done but I did not like the feelings I was having as I parked my car and walked into the cancer center.  I got checked in and waited for like what seemed like forever.  Once they called my name, I was taken to a room with several dressing rooms.  I was told to take off my shirt and to put on a lovely pink gown from the waist up.  Once I got my gown put on, I put my personal belongings in a locker and entered the holding room.  As I entered the holding room I couldn’t help but notice I was the youngest women by at least 20 years.  I felt as if the other women were staring at me but I am sure they were wondering why I was there considering my age.  

I was nervous as could be and it was obvious the other ladies were nervous too.  Nobody talked.  We all just sat there hoping our name was the next one to be called.   I waited for approximately 20-30 minutes and my name was finally called.  The tech was wonderful.  I told her my history and she patiently listened.  As usual, I cried during most of the visit—not because it hurt but because of the circumstances.  I was not excited about being there but I knew this is what I had to do.  Once I was done, the tech told me to go wait in the holding room.  She informed me it is not uncommon to have to repeat the mammogram and because that was my first, there was nothing to compare it to.  I sat nervously in the waiting room, expecting to get a call back.  A nurse came and got me and took me to another room.  She informed me the radiologist looked at my mammogram and everything looked great!  She told me I could get my shirt back on and she wished me a great rest of the day!  I was on cloud 9 when I left.  I knew I still had to have an MRI before we could start trying for our third child but it was nice to check the mammogram off the list.  I called my Dad to let him know my baseline mammogram was done and it was clear!  “Thank God!” he exclaimed when I told him the news.  I did not tell him I had an appointment the following week for my baseline MRI.  I figured he would put two and two together and figure out my BRCA2 status.  I did not feel the timing was right at that point to share with him my actual results of the genetic testing.  

On November 8, 2012 I returned to the cancer center so I could have my breast MRI.  Every time I had to go to the cancer center my stomach would literally get knots in it.  I thought it would get easier each time I went but it never got easier.  I was scared to death to have an MRI.  This was definitely a first and I had no idea what to expect.  I sat impatiently in the waiting room and they eventually called me back.  I had to wear a gown from head to toe and I had to make sure all of my bobby pins were removed from my hair.  The nurse explained the procedure.  I had to get an IV started so I could have an MRI with contrast.  I went to a holding room and an IV was started.  The nurse then led me back to the room so I could have the MRI.  

I had the worst stomach ache when I arrived in the room with the MRI.  The nurse told me there is no lady like way to get on the table of the MRI.  Unfortunately, a breast MRI has to be completed with the patient laying on her stomach.  I threw open my gown and laid down on my stomach on the table.  Once I was situated, the table rolled back into the MRI machine.  They gave me a squeeze ball so I could alert the tech at any time during the procedure should I experience any problems.  The tech told me test would take approximately 30-40 minutes. I was told to hold as still as possible otherwise the test would have to be repeated at a later date.  I tried to stay positive and as still as possible during the exam but it was scary.  I tried to distract myself by singing songs in my head but I was growing increasingly nervous throughout the test.   At one point during the test I started panicking!  I thought of my poor mother having an MRI just weeks before.  I couldn’t even begin to imagine the fear she must have felt but the thought of it alone over took me.  I almost squeezed the ball to have the tech stop the test but then I decided to just pray.  I knew if they had to stop the test, I would have to reschedule and do it all over again.  The MRI is so sensitive that it has to be scheduled around a woman’s monthly cycle.  I had a plan and I wanted to stay on track.  I knew if the test had to be stopped, I would have to wait another month to schedule the MRI and that would prolong our goal of conceiving our third baby. Finally, after about 35 minutes, I was done.  The tech told me that I would receive a call in a week or so with the results.  The waiting game was not easy for me. I wanted to know the test was clear so my mind would be at ease and so we could move forward with our plan.  I received a call approximately 5 days later from one of the nurses to let me know the MRI was clean! 

Josh and I went out for dinner on Friday, November 16th to celebrate my birthday and to celebrate the great results from my first two diagnostic tests.   We went to the Elephant Bar and Grill and we had a nice, quiet dinner.  We agreed that since my diagnostic tests came back clean we would move forward with our plan.  

The following week was Thanksgiving and Dad’s 56th birthday.  Ironically, Dad’s birthday fell on Thanksgiving that year.  I do not recall the specifics but it seems as if Dad and Tess were at our house the days leading up to Thanksgiving.  We were planning on spending Thanksgiving in Gretna with Rochelle, Scott and the girls.  Josh, Bryson and Holden rode together and I rode with Dad in his truck to Gretna.  I had previously bought Dad’s birthday card but rather than mailing it, I wanted to take it with us to Gretna so he could open it on his birthday.    I grabbed the card and unsealed envelope as we left our house.  I put the card and envelope in the space below the cup holder in Dad’s truck and away we went.  As we were driving, Dad and I heard a strange noise but we did not think much of it. 
As we got close to Gretna, I started feeling emotional.  I was very excited to see the rest of our family but I knew it was going to be difficult walking into Rochelle and Scott’s house for the first time since Mom passed away.  It had only been a little over one month and I was not sure how I was going to handle being in the house where Mom passed away.  I was also sad knowing this was the first holiday we were going to celebrate without Mom.  This was the first of many “firsts.”  I could not imagine having Thanksgiving without Mom.  In years past, we would go to the farm for Thanksgiving and Mom would plan and prepare the entire meal.  Rochelle and I would help but Mom was definitely the head chef.  We warned the guys that our first Thanksgiving feast without Mom would be memorable because we were not sure if we could prepare an entire feast without Mom’s guidance.  We decided to have fun with it and cook away.  Surprisingly, it all turned out well.  The only thing missing was…Mom.

As we were debating on “how much of this and how much of that” to put in the numerous side dishes, Dad received several texts from family and friends wishing him happy birthday and happy Thanksgiving.  The messages were heartfelt and it was a very emotional day.  In order to try to distract from the sadness, I asked Dad for the keys to his truck so I could go get his birthday card.  I went to the truck, grabbed his card and went back inside.  Dad put on his glasses and took the card out of the envelope.  As he was opening the card, Mom’s picture fell out of the card.  We all stopped in our tracks!  We received some laminated cards with Mom’s picture and a nice poem as a gift following her death.  We were dumbfounded when Mom’s picture fell out of Dad’s birthday card.  Dad kept the laminated card of Mom in his truck and as we were traveling to Gretna, the noise Dad and I heard must have been Mom’s picture falling into his birthday card.  We took that as a sign that Mom was wishing him a happy birthday!  What were the chances that the laminated card would fall in the inside of his birthday card?  We felt blessed and the somber mood was lifted! 

We ended up having a nice Thanksgiving weekend.  Our family tradition is to take part in Black Friday.  Dad was stressed out about shopping for the grandkids for Christmas because that is something Mom always did.  Dad would go along with Mom but ultimately Mom would pick out the gifts and wrap them.  Rather than us picking out something for our kids, we talked Dad into coming along with us to experience Black Friday in the city.  He had gone with us previously in McCook but it is a whole different experience in the city.  As soon as we pulled up to Wal-Mart in Gretna, Dad started getting grouchy.  We had to park out in the middle of nowhere and walk quite a distance in the bitter cold to fight the obnoxious crowd.  Rochelle, Josh and I were excited to get shopping but I would venture to say Dad would have rather been anywhere but there.  We found what we set out to get and we were discussing our next stop.  Dad interrupted us and told us to take him back home.  He had enough shopping after one stop and he made it abundantly clear he was done shopping!  Rochelle, Josh and I dropped him off at the house with Scott and the kids and away we went.  Several hours later we returned with all of our Christmas shopping complete!

I was sad to see the weekend end but we were already planning our next get together for Anisten’s birthday party.  Our family headed home and Dad stayed with Rochelle and Scott for a few more days.  There was no rush to get home because the farming season was over and there was no point sending Dad home to an empty house. 

The following day at work, I had several emails and voicemails to get through.  As I was listening to my voicemails, I noticed I had 19 saved messages.  I decided that was as good as time as any to review the saved messages to see if there was anything that needed to be addressed or if I could delete the old messages.  The first several messages were related to cases that had settled therefore I deleted them.  I would listen to the first few seconds of the message and hit “7” to delete the message.  I was flying through the old messages, assuming I could delete the subsequent ones.  My right finger was on “7” and a pen was in my left hand in the off chance I needed to write down a message.  All of a sudden I heard, “Hi sweetheart it’s Mom.”  I couldn’t believe my ears.  Out of habit, I almost pressed “7” and deleted the message.  I stopped myself just in time and I continued to listen to the rest of the message.  I was so excited to hear her voice.  I don’t know what prompted me to save her message from August 2012 but I am so thankful I did.  Below is a link to the voicemail from Mom.


https://www.youtube.com/watch?v=_okyM8O7uCc&feature=youtu.be



I immediately called Dad and Rochelle to let them know the treasure I found!  I have the capability at work to convert voicemails to emails therefore I sent the email/voicemail to Dad and Rochelle so they could hear Mom’s voice.  We were all very excited and felt comforted with the sound of her voice.   

On December 18, 2012, we found out I was pregnant!  My anticipated due date was August 31, 2013—exactly one year from the day we learned Mom had several spots scattered throughout her brain.  December 18, 2012 was another big day in our family.  It was the day Rochelle went to the doctor to get her baseline mammogram like she promised Mom she would do.

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