Barbara Jean Kaprielian

Barbara Jean Kaprielian of Tustin, California passed away on June 16, 2014. Services will be held on Saturday, August 16, 2014 at 10:00 am at Trinity United Presbyterian Church in Santa Ana, California. Arrangements under the direction of Westminster Memorial Park, 14801 Beach Blvd. Westminster, CA 92683. (714) 893-2421

In lieu of flowers the family has asked that donations be made in Barbara’s name to either one of the following sites:

UCLA team https://www.crowdrise.com/TheBarbKaprielianMemorialFund2/fundraiser/alisonkaprielian

USC team https://www.crowdrise.com/TheBarbKaprielianMemorialFund/fundraiser/alisonkaprielian

The Kaprielian Family’s Journey

(Abridged version)

By Barbara Kaprielian

As a fourteen-year survivor, I am happy to share my journey with you. You may have heard that when a family member gets cancer, the whole family gets the cancer as well. It is a journey that my family has shared for the past fourteen years.

My story began in 2001, I was working as an elementary school principal and managing two small children. Alison was 9 years old and James was 6 years old. My diagnosis was clearly not out of the ordinary at that time. A mammogram identified a lump in my breast and some DCIS cells. I went through chemotherapy, surgery to remove my left breast, reconstruction and followed a seven-‐year regimen of oral medication.

There are many stories during that time but a few stand out. I was advised to look for a wig when I still had hair and this is what I did. Since I was a school principal, I felt I needed to have a wig so that I wouldn't’t scare the children at school when I went bald. So I off I went to find a short sassy wig. I continued to be blonde because I still wanted to have fun.

I remember a first grade student coming up to me one day at school and saying,“ My mom says that that isn’t your real hair!” Wow, how do I respond to that? All I could do was laugh. On one occasion, after I was completely bald, I agreed to dress up like a baby at school. I had a bonnet that completely covered my head, complete with giant diapers and the rest of the costume. I believe I told the kids I would do this if they reached their reading goal. It was a fun day and lots of laughs but the biggest laugh came in my office at the end of the day when I donned my bonnet and let the bald head shine! I really did look like a giant baby. I laughed so hard it hurt!

But wearing a wig was not all that rosy and going bald was even worse. Even after losing my hair three or four times, it still doesn’t get easier.

Another challenge was assuring my children that I would be okay. One of the most vivid memories I have prior to my surgery was a conversation with sweet James. I was tucking him into bed and he asked me if I was going to die. I could tell from his eyes that he was concerned about mom going into the hospital. He told me that the kids at schools told him about a boy whose mom had recently died from cancer. It was difficult for me to respond but I assured him that I would be back home with him after the surgery. Fast-‐forward to high school and James becomes friends with that boy who lost his mother. He is a fantastic young man and friend and I took a special liking to him as well.

In August 2008, my cancer returned again. This time in my bones and would eventually spread to my liver. My cancer changed and was now triple negative. The last six years have been a roller coaster with short remissions and many different chemotherapy options, along with radiation and liver radiation spheres shot into my liver.

One of the positive events that took place at the beginning of my recurrence was with Alison. Alison won a contest with MTV and Miley Cyrus was coming to town. Our month was filled with filming and excitement that led to a New Year’s Eve Concert at Beckman High School with Alison being the Queen Bee. Her cause…Breast Cancer. She started the Pink Ribbon Club at Beckman High School and was determined to make a difference. She was presented a check for $20,000 at the concert from Miley and forwarded that money to the Komen Foundation. My daughter and son experienced a once in a lifetime opportunity and all for a good cause. Being that I lost my hair again, MTV gave me a beautiful wig and makeover for the festivities! We will never forget this experience!

I couldn’t travel this road without a strong support system of family and friends. So many ways that everyone has pitched in to help our family. I keep a grateful book and try to write in it daily to never forget those who have helped along the way. They are my “Angels” in my life.

This journey has brought our family together in many ways. Both of my children who are now twenty-‐two and twenty years old, have learned to live each day to the fullest and are grateful for the gifts that have been given to them. They have hardly known what is like to not have cancer as part of their life. They refer to me as their “Warrior Mom.” My husband, Doug, has been the rock to keep us together. He shows his concern quietly, and yet can motivate me to Fight On! Alison graduated from USC in 2013, and comes from a long line of Trojans. It had always been her goal to attend USC. James is a sophomore and attends UCLA. He helped the Bruin baseball team earn their first National Championship in 2013. Doug is and always will be a Trojan and bleeds the cardinal and gold. Even though we are a house divided, it has been a wonderful experience to have my children attend both great universities. We’d have some interesting stories with Alison and James being crossed town rivals.

In closing, my mantra has always been to stay positive and embrace life! Never hold your head down, never say you can’t, never limit yourself and never stop believing!

Barbara Kaprielian

Survivor

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

The Kaprielian Family’s Journey

By Barbara Kaprielian

My Journey Begins…

JANUARY 2001

I remember this time as if it was yesterday. It was a rainy Friday afternoon and I had my annual mammogram appointment. Not wanting to drive to Laguna Hills, I wanted to cancel and reschedule but Stacy, my assistant principal, encouraged me to keep my appointment. So I went…

The following Tuesday was the first meeting of our neighborhood Bunko group. Of course, I

organized it and was very excited about getting together with 12 women for some fun! While

still at home, I got a call from Saddleback Breast Center that they would like me to come in for a

follow up appointment. “Don’t worry, most of the time it isn’t anything!” This is what I was told.

But I quickly lay down on my bed and did a quick check to be sure I didn’t feel anything. But I

did. My stomach sank to my knees. I called my sister Kathy and she said maybe it is just a cyst. I

still remained hopeful.

On Wednesday, I went to my follow up appointment and was immediately sent to the “other

side.” By the way, I have remained on the “other side.” After another mammogram and then an

ultrasound, I heard the news. “ It looks like you have cancer. Let’s do the biopsy to be sure” I

agreed but knew that the radiologist was correct. Results would be ready by Monday. 99 % sure

that it was cancer.

What did I do? I went to my car and cried. I call Mom and Doug and to be honest I am not sure

whom I called first. This was the worst day of my life.

But wait! I have two young kids at home, Alison, 9 years old and James 6 years old. I can’t let

the cancer take over my life! We have our annual snow trip to Mammoth this weekend and we

will go! Doug and I made the decision not to tell the kids anything until we have a plan! So off to

Mammoth we went.

Poor Nancy, I let her know on the chair lift going up the mountain. She didn’t know how to

respond. I cried every night while in the shower so that no one could hear me. I looked at the

bruise on my breast from the biopsy. How I hated cancer!

The trip was fun but the ride home was the longest and quietest ride. Not much to say but lots

of thoughts going through our heads. What was next?

TREATMENT PLAN

Wow! I had no idea how challenging it would be to choose a treatment plan. All I knew was I

had cancer and I wanted it out of my body NOW! So being the patient person I was not, this

made if very challenging. Between Doug, Claudia and Mom, I had lots of support at

appointments. And then there was Janice Johnson. She was a third grade teacher at Arroyo and

one in a million. She was battling breast cancer and it was not looking good for her. But she was

such an inspiration for me! She met with me for lunch and handed me a book, Breast Cancer

Survival, by Dr. John Link. She gave me a journal, advice and encouragement. I began reading

the book and lo and behold the first chapter was “Get a Second Opinion.” I hadn’t done this yet

so the next day I called and asked to have a second opinion. It just so happen that Dr. Link would

be my second opinion, as he was in the office that day. So there is where my story really begins.

I met Dr. Link and immediately felt at ease. He gave me another option. Try chemotherapy first

and then surgery. If need be, have chemo again after surgery. One of the reasons for doing this

was because of my young age and the age of my children. The goal was to go after that cancer

aggressively. It all made sense to me so here begins my relationship with Dr. Link and all the

wonderful nurses and staff that he employs.

TELLING THE KIDS

Alison was in fourth grade and James was in first grade. We sat in my bedroom and told the kids

that I had cancer and was going to be taking some medicine to help me. We also told them that

my hair might be falling out and that I may look a little different. To be honest, I don’t think they

really even knew what cancer was and what it was all about so it wasn’t that tough at the time.

But in time they would learn more. I am so sorry to say but when Mom gets cancer, the whole

family gets cancer.

WIG LIFE

It is amazing how many angels have been in my life and how grateful I am for each of them.

Suzanne is an angel and continues to be one. She is my good friend and go-‐to person if I need to

do any clothes shopping, as she always looks great! So when she volunteered to help me find a

wig, I didn’t say no! I was advised to look for a wig when I still had hair and this is what I did.

Since I was an elementary school principal, I felt I needed to have a wig so that I wouldn’t scare

the children at school when I went bald. So off we went to find a short sassy wig for me. I

continued to be blonde because I still wanted to have fun.

I remember a first grade student coming up to me one day at school and saying,“ My mom says

that that isn’t your real hair!” Wow, how do I respond to that? All I could do was laugh.

On one occasion, after I was completely bald, I agreed to dress up like a baby at school. I had a

bonnet that completely covered my head, complete with giant diapers and the rest of the

costume. I believe I told the kids I would do this if they reached their reading goal. It was a fun

day and lots of laughs but the biggest laugh came in my office at the end of the day when I

donned my bonnet and let the bald head shine! I really did look like a giant baby. I laughed so

hard it hurt!

But wearing a wig was not all that rosy and going bald was even worse. But more about that

later.

HAPPY VALENTINE’S DAY

Most people think of Valentines Day as a time for roses, candy and love notes from a special

person. For me, Valentines Day 2001 was my first day of chemotherapy in Fountain Valley. My

angel Mom wanted to accompany me and I have to say those times spent with her in the chemo

room were special. But on this Valentines Day, the only red I saw was in the poison dripping in

my veins. To this day, red Gatorade gives me the chills.

Within a few weeks, my hair started to come out. It was awful! I felt like a shedding dog. I had

cut my hair shorter but it really didn’t help. I would wake up and my pillow would be covered

with my hair. The shower drain didn’t look so good after my shower. Doug was traveling so I

called on another Angel, Toni. She was a parent at my school, our kids were the same age and

we had become good friends through the kids and sports. I asked her to come over and shave

my head! Reluctantly she agreed. The deed was done. I was now bald. I now looked like a

cancer patient because only cancer patients have bald heads! There was no turning back. I have

cancer and I have a bald head. I honestly think that losing my hair is the worst part of having

cancer. Call me vain or too concerned about my looks, but losing my hair made me feel less of a

woman.

Having chemo is a lot like having a baby. You forget about the bad parts. I know I had times

where I felt sick and sometimes I was too tired to move on but I tend to forget about that. What

I do remember is moving on. I remember going to James’ Little League Baseball games and just

sitting there enjoying the game and so happy to be there. I remember going to work and being a

principal and so happy to be there. I remember taking walks and so happy to do this. I knew I

was going to beat this cancer!

Angels appeared with meals and good wishes. I was tired and having two small children, while

working full time, the meals were so appreciated! Alison and James tried new foods and they

actually liked them. It opened a whole new world of eating for them. We never went hungry

and I will never forget the generosity of our friends. Another thing I remember is the outpour of

cards I received. I typically don’t keep a lot of cards, but I have every single one of them that was

sent to me during this time. Diane Aust was a regular card sender. I know she doesn’t even

know how much her cards meant to me.

My treatments were every three weeks so as soon as I started to feel better, it was time to have

another treatment. I do remember the last treatment day. I had to come in the next day for

saline treatment and I could hardly stand the smell of the room. I knew I was done.

Well it was now April, time to recuperate from the chemotherapy and get ready for surgery. My

initial lump had decreased but due to the DCIS cells in my left breast, a mastectomy was in order.

This meant more meetings with Dr. Deck, my surgeon and another important person in my life,

Dr. Watanabe, my plastic surgeon. Now there were more decisions to be made about my

reconstruction. Since I live in a bathing suit in the summer, it was important to me to have my

breasts back. But honestly I was so small that this was now my opportunity to actually have big

girl breasts. So I agreed to a small C size, which was a huge improvement over my initial size. In

doing so, I would have to put an implant in my right breast and have a brand new “boob” on the

left. Woo-‐Hoo! But everything has a price…

My surgery was scheduled in late May and I agreed to take the last couple of weeks of work off

to recover. I remember it being Dad’s birthday and the family was all together. One of the most

vivid memories I have prior to my surgery was a conversation with sweet James. I was tucking

him into bed and he asked me if I was going to die. I could tell from his eyes that he was

concerned about mom going into the hospital. He told me that the kids at schools told him

about a boy whose mom had recently died from cancer. It was difficult for me to respond but I

assured him that I would be back home with him after the surgery. Fast forward to high school

and James becomes friends with that boy who lost his mother. He is a fantastic boy and friend

and I took a special liking to him as well.

The best news I received after my surgery was that my lymph nodes were CLEAR! This enabled

me to skip radiation and chemo post surgery. I began my follow up treatment with Tamoxifan

and eventually Aromasin to prevent cancer reoccurrence.

The worst part of the surgery was being hooked up to drains and having to lay low…you can’t

keep me down! I came home and cleaned James’ closet. Bad girl. Dr. Watanabe scolded me for

exerting myself, however, I didn’t feel that I did. The drains were just annoying. No one really

explained that to me.

I will never ever forget the day I took the bandage off my left side where my breast had been. I

was by myself in the bathroom and I unveiled myself only to see the biggest ugliest BRUISE and

no breast! I thought I was going to faint! No one warned me about that one either. I quickly

covered it up after a massage of -‐-‐-‐-‐-‐-‐-‐-‐-‐to heal bruising.

I read a lot of great books and I focused on positive books! I remember reading the Lance

Armstrong book and few others that made my situation look so much better. I stopped wearing

the wig, as I wasn’t working. Time for the hair to grow back! I actually snuck into my office after

school was out and did a little work. I was slowly getting my life back. I was so happy! By the

time our family went to Lake Topaz, my hair was short and sassy! I could don my head and feel

good about myself! Life was good!

School started in September and later in the month my staff created the Arroyo Team for the

Komen Annual Race for the Cure. The support was overwhelming! Students, parents, friends

and family all joined our team wearing our blue t-‐shirts.

I remember the Falbo family staying past the race time and watching the Survivor activities. I

proudly joined my “sisters” on the steps of the Pacific Life building. I remember the program

being quite emotional and beautiful.

For the next seven years, I was diligent in taking my oral medication to assist me in preventing

cancer. I exercised, ate well and tried to do what was best for my body and soul. Every six

months I visited the doctor to have blood work done and check to make sure everything was

okay. Dr. Link passed me on to Dr. Waisman and Dr. Nguyen because I was more of a

maintenance patient. Everything seemed to be good.

AUGUST 2008

James was entering high school and Alison was going to be a senior, both at Beckman. This was

going to be a great year having both kids at the same school! I went to see Dr. Nguyen for my six

month check. thinking that after this I will only be going in once a year. I had finished the post

treatment medicine and was ready to live on my own…cancer free! And on top of that…I felt so

good!

Well my blood test didn’t look so good…in fact, there was a change in my tumor markers. So Dr.

Nguyen sent me home and said she would call when additional news when she had it.

Her timing was awful. I was picking up James from freshman football practice and she called on

the mobile. I parked and listened. “It looks like you have cancer.” All I remember is sitting in my

car and crying. I remember seeing a parent that I knew come by and he looked concerned but I

was too upset to even talk. I picked up James and his friend Adam and I think I told James after

we dropped him off but to be honest, I don’t even remember. I was in shock. How could this

be? I have been cancer free for seven years?

Let the scanning begin. I had a brain MRI, a PET scan, and eventually a biopsy once they located

the cancer. Doug, Claudia and Mom came with me to appointments. The testing was grueling,

not knowing where and how much. Eventually, I was told that it was in my tailbone (sacrum) of

all places! After consulting with Dr. Nguyen for a treatment plan, I decided to get a second

opinion and went to see Dr. Link. Dr. Link’s plan was similar to Dr. Nguyen but I felt I needed to

be back with him. His office is so much closer to my home and made it easier for treatments.

TREATMENT

So I began immediately with the first of four treatments: Avastin and Abraxane infusion every

three weeks! Let the cocktails flow! And what I mean is let the “Cocktail Therapy” begin. I have

mentioned angels before but the angels in Cocktail Therapy are one in a million. Anne’ hosted

the first meeting right after my first chemo session. I will admit that drinking was not on the top

of my list but I needed lots of water to cleanse through my system. What began as a few women

getting together for drinks and appetizers evolved into an event after each chemo session and

beyond. I believe that the therapy was good for all and not just me. But I did love being with the

ladies and having time together. At one point we had t-‐shirts made that said “Cocktail Therapy”

all in bling, of course. I will never forget all the angels in my Cocktail Therapy group.

December came and my treatment was over. But the fun began as Alison won a contest with

MTV and Miley Cyrus was coming to town. Our month was filled with filming and excitement

that led to a New Year’s Eve Concert at Beckman High School with Alison being the Queen Bee.

Her cause…Breast Cancer. She started the Pink Ribbon Club at Beckman High School and was

determined to make a difference. She was presented a check for $20,000 at the concert from

Miley and forwarded that money to the Komen Foundation. My daughter and son experienced a

once in a lifetime opportunity and all for a good cause. Being that I lost my hair again, MTV gave

me a beautiful wig and makeover for the festivities! We will never forget this experience!

After the dust settled, it was time for radiation. Under Dr. Ash’s guidance, I spent January with

radiation. It lasted four weeks and was not painful at all. I had to go every day so I made my

appointments late in the day so I could still work part-‐time. Everyone in Dr. Ash’s office was

wonderful too. I can’t express enough gratitude for those who worked with me.

I continued to come into Dr. Link’s office for bloodwork and a dose of Zometa once a month.

Zometa is an infusion to help strengthen my bones. I also had PET scans every three months.

Basically I was on a short leash! I have learned to love short leashes!

In June 2011, had another reoccurrence! The cancer was still in my bones but spreading. After

getting second opinions from Cedars Sinai and others, I decided to try a clinical trial at St. Jude’s.

It was a Parps inhibitor trial and appeared to be working on triple negative cancer, which was

what I now had. We had a family vacation planned to Alaska with the whole Woesner clan and

decided to wait until we returned to tackle the cancer.

The cruise was fun, despite poor James having mono, and we put the cancer out of our minds.

But the cruise ship had an activity toward the end of the week, “On Deck for the Cure.” It was a

breast cancer walk around the ship to help raise funds for Komen. As expected all able family

members participated in the walk, donning our new caps and supported the cause. Did I

mention that every one of my family members is an Angel in my life? Well they

are.

I dreaded going home and starting treatment again but I was optimistic that this may be the

cure! I had been let go of my job and was feeling a bit down, but turned this opportunity into a

time of healing! And time I needed! I spent more time in the chemo room at St. Jude’s than

ever before. I had many friends accompany me. I always felt badly as it took so long. The

treatment was painful to my veins. For the most part the nurses were just okay. And the room

was like a hospital setting. Oh how I missed the quaintness of Breastlink! But chin up, I was

going to get through this. The only positive thing about this treatment was that I didn’t lose my

hair. There was one nurse in particular that took a liking to me and whenever she was there,

things were better. Her name was Rowena and yes, another angel. She was Philippine and very

sweet. Another angel at St. Jude’s was Gayle. She was in charge of the trial and was a huge

support for me. She eventually helped me get an appointment at UCLA for a consultation.

Because of the pain and frequency of the chemo treatments, I was advised to get a port. The

whole idea bothered me. Having a foreign object in my body just didn’t appeal to me. But I

went ahead anyway and had it done. Claudia went with me. I remember when the nurse came

in and asked who was getting the port, I immediately pointed to Claudia and said, “She is!” We

laughed! The procedure wasn’t that bad and now I had a new friend…his name is Pablo. He was

in my body illegally but I accepted him. It made a huge difference in my chemo treatments! No

more pain!

At the end of August, I needed to do some CT testing. Just when I thought things couldn’t get

any worse, I am told that my cancer is now spread to my liver. I don’t understand this. How

could the cancer spread when I am putting poison into my body? Still hopeful, I pray that maybe

it is something else. Dr. Patel, whom I didn’t really love, tells me to get my life in order and not

to work anymore. REALLY? Is this what I wanted to hear?

I ran not walked back to Dr. Link. We decided to take another biopsy of the cancer that was now

in my liver to be sure that we were dealing with the triple negative cancer. We had tried twice

before to extract a biopsy from the bone area but were unsuccessful. I purposely forgot to

mention these actions as they are not fond memories. But I was told that getting a specimen

from the liver may be easier.

So Doug and I venture up to Sherman Oaks to see Dr. Chin. Not sure if he is happy to see me

again. After we watch the video in his office that tries to scare you to death, I settle into my

gown and wait for the procedure. It wasn’t easy but success. Dr.Chin got what he needed and it

was sent to Claris Labs for more specific information.

After waiting several weeks, we have a plan. So in September, I began infusion treatment of

Abraxane and Zoleda oral medicine for seven days. I did this every other week. Now, instead of

getting a dose of Zometa, I received an Xgeva shot once a month for bone strengthening.

In December I had another PET scan. I remember being at the nail salon getting my toes done.

Donna, the best Physician Assistant ever, left a message for me on my voicemail. I reluctantly

listened to the message. I started to cry…tears of joy…no sign of my cancer! I couldn’t believe it!

I was afraid to believe it. But two days later, Dr. Link called with the same message. I WAS SO

HAPPY!!!!! Merry Christmas to me!

Keeping me on my short leash, I had another scan in March. This time I didn’t get any calls. I

had Doug come with me to my appointment. I was a wreck! Sitting in the waiting area, Dr. Link

walks by and casually says, “Still looks good!” Relief again. I am always buying more time.

June does not seem to be a good month for me. It was back again in June and in my liver. Did I

mention that I never have any symptoms of the cancer in my liver or my bones? NOTHING!

So here I go again!

I began treatment in July. The hardest part this time was telling James. He was up in Wenatchee

playing summer baseball. I didn’t want to tell him over the phone but finding the right time

when we were there was equally difficult. For some reason always telling James that my cancer

is back is the most difficult. Perhaps because he is my baby boy and always will be.

Dr. Link put me on the same treatment plan that I had before. It seemed to work, so why not?

In October, my scan looked good but not perfect. He had me do one more month of chemo and

then gave me “Chemo Holiday” for a couple of months. Merry Christmas to me again.

January scan showed that the cancer returned to my liver and sacrum. I was so disappointed

because I was feeling so good! My hair was finally coming back and I was no longer wearing the

Barb signature hats. By this time I had lost my hair three different times. It appears that the

cancer was being very aggressive in my liver. Not good. Dr. Link recommended a different

protocol for me. He thought it would give me a longer remission. So I began treatment the

following week on January 31 with Havagen. Let’s gooooooooo!

This treatment was not so bad and it only took one hour! I had two weeks on of infusion and

one week off. Then I had to get a Nulasta shot the following day. I put a hair growth treatment

on my hair and it didn’t fall out! I was so thrilled! Symptoms were minimum until the last

treatment when I began to get neuropathy in my fingers and toes. It didn’t hurt but was so

frustrating! I kept dropping things and I couldn’t feel my feet when I walked!

In April, it was time for another scan. Because of some work commitments and Alison

graduating from USC, I was able to take a short chemo holiday. My scan showed improvement

but not the improvement we were hoping to see. So here I go again! New cocktai, new

adventure! Chemo begins again in May! Doxil...get this cancer out of my body!

This recent scenario has probably been my worst. I am at the point now that I am really angry

about having cancer. I exercise, eat well, hydrate and to what I believe I should be doing to take

care of my body. I have focused on the spiritual part of my life as well. I have given this all to

God and hope that he can give Dr. Link the guidance and knowledge to help me. I work part-‐

time and that is even a stretch. I read books that will inspire me and keep me positive. I

surround myself with people who are not negative. I attend baseball games...a lot of baseball

games. I smile and when people ask me how I feel I say, “Great!” I don’t complain, well except

maybe to Doug but REALLY? Hoping this is just phase and that I will snap out of it soon!

Well let’s fast forward a bit. My Doxil treatment covered most of my summer. James was

playing in Omaha and Cape Cod and we went to watch him play. But of course, I scheduled all

travel around my chemo treatments. Doug and I managed to get up to Lake Topaz but it wasn’t

the same without our kids. Alison was in Africa and James playing baseball in the Cape.

In August I had another PET scan. It showed that the cancer had spread and was now covering

most of my liver. Needless to say I was extremely disappointed. A week later, Dr. Link put me on

yet another trio of cocktails…Cytoxan, Methotrexate, 5 Flourouracil with treatment every three

weeks. For the first time I started to experience severe side effects. I became very bloated and

looked like I was about four months pregnant. I was so uncomfortable and couldn’t sleep or

wear any of my clothes!

In September, Dr. Link drained some of the fluid and he got about 1 liter of it out of me. It was

some relief and I felt better. The fluid showed no cancer cells, which was a relief.

After two cycles of this treatment, more blood tests were taken. Unfortunately, results indicated

that the treatment wasn’t working and that my tumor markers and liver enzymes were elevated

as well. So now what do we do?

After another draining of fluid in my abdomen, I started back on Abraxane. I had some success

with this in my earlier treatments so I felt good about it.

Well about a week after my first treatment of Abraxane, I began to get a rash over my body as

well as mouth sores! And I thought the bloating was bad! The sores on my tongue were the

worst! I couldn’t eat or talk…two of my favorite things to do!

Dr. Link prescribed some magic potion for me and wouldn’t let me do week 2 of treatment. He

could see I was in bad shape. Let me tell you about the potion…it was horrible! It tasted like

gasoline! I had to plug my nose to get it down, 4-‐5 times a day. But it worked! Sores all gone!

When I went back for week 3 treatment, my white blood cell count was low and so I was unable

to do treatment again. Now getting a little nervous…is the cancer going to spread everywhere in

my body?

My past experiences have led me to believe that I have to be my own advocate. It is obvious

that my body was not responding to the chemo anymore. I felt at a loss. I didn’t feel good. I

didn’t feel like Barb! I needed a SNICKERS bar!

Angels come into our lives and you never know when or how they will affect you. I believe that

God puts them near me purposely. I had breakfast with Lori Feeney, also a sister in breast

cancer and patient of Dr. Link. She has been cancer free for some time now. We started talking

about nutrition and vitamins and what we put in our body. She told me about Dr. Kaslow, who

ironically is a former parent from Arroyo, and how he helped her during treatments. I had given

this some thought before our conversation, but listening to her motivated me to give him a call.

So I took the plunge and met with Dr. Kaslow. He put me on a regimen of vitamins and

supplements to help my energy level and take care of my liver.

Anne’ has always been a special angel. She had a conversation with a friend about my situation.

He told her about a procedure that works on tumors in the liver. His name is Kevin Hungerford

and lives in Tustin. I gave Kevin a call and he spent almost an hour on the phone with me

explaining how the procedure works and that it is offered at St. Joseph’s Hospital. I went on the

website, Sirtex.com and gained as much information as I could. It is a radiation treatment that

shoots microspheres of radiation into the liver through an artery and attacks the tumors. Since

my cancer cells were outsmarting the chemo, I thought this might be another option…Hope is

coming back!

The next day I met with Dr. Link and shared what I had learned. He was familiar with the

treatment and had sent patients to Dr.Velling at Hoag. So off to Hoag I go for a consultation.

I liked Dr. Velling. He was a no nonsense kind of guy. Insurance is the biggest obstacle, as the

procedure is very expensive. So here I wait…but not giving up hope. Knowing that God has put

these people in my life for a reason.

Insurance approval came through and my procedures were to begin in November. Prior to the

start of this new procedure, I felt at my lowest low…I began getting bloated and swollen and

later learned that this is called asistes. It appears to be a function of my liver not doing well. Dr.

Link drained me several times, each time taking out about 2-‐3 liters of fluid. The fluid tests show

no cancer cells. Thank goodness! However, it wasn’t getting any better.

On one Sunday, it got so bad that I went to the emergency room. The doctor would not drain

me but prescribed diuretics for me to take. Dr Link was in agreement but at my next

appointment, he drained me again. I felt like I was 4 months pregnant, with swollen feet and

was just plain miserable.

I began Abraxane again, which is a cocktail I was on before that appeared to work for me. There

goes the hair again! UGH! I was just started to like my new look! After a few rounds, my blood

counts began to decline. A Nulasta shot would help the white blood cells but not the red cells. I

was really tired all the time and seemed to nap more than anything else.

But it was time for my radiation procedures at Hoag. I would go in for mapping, then the have

the right side of the liver injected and finally the left side of the liver. It appeared that all went

well. But at this time I still don’t know final results. A scan in February will let me know if it is

working!

In the meantime I continued with chemo treatments…unfortunately blood counts were

continuing to decline. I had to skip a few weeks, but the good news is that it was over the

holidays! I had a blood transfusion to help with the red counts and then off for a couple of

weeks.

It was a great time even though my energy level did not really improve that much. James was

home from college and Alison home too. Additionally, we added Reggie to our household, a new

4-‐month-‐old Beagle. Yikes! Things changed quickly around the house! As a family, we had some

good times…movies, dinners, pizza making, bowling, Disneyland…I don’t think my kids know how

much each of these things meant to me. I loved sitting on the couch with James watching

movies. I love Alison and James so much. It was very special to have this time with them.

February came and sure enough it was time for my scan. Anxious, nervous, excited, scared…I

shared all these emotions. I was praying and hoping for some progress. My liver was a mess in

the fall and I believe the tumors took over 80% of my liver. (No wonder it wasn’t functioning too

well!) The week before the scan, I was a wreck, crying easily and not feeling real strong. But I

prayed about it and eventually came to peace with it.

I had the scan on a Friday at Hoag for both Dr. Link and Dr. Velling. Over the weekend, I kept

hoping for one of the doctors to call but it did not happen. I thought they would give me some

good news.

On Monday, Doug accompanied me to my appointment with Dr. Link. Not a lot of words shared

between us. When Dr. Link came in the room, the first thing he said was “Good News!” I began

to cry tears of joy! While my cancer is not gone, it appeared that the radiation treatment along

with the chemo had done a good job. There was still a bit on my liver and sacrum and a new

nodule on my lung.

I was feeling relieved and even happier when Dr. Link said I could have a month off before

starting treatment again! Time for my body to heal! The side effects were not good at this time.

My nails were falling off, my neuropathy had returned to my feet and hands and sleeping had

become a challenge!

While I know my fight isn’t over, this has given me renewed strength and motivation to continue

to fight this battle!

ANGELS IN MY LIFE

I am continually reminded of all the people who have supported me through this journey. They

say it takes a village to raise a child. Well I believe it takes a village to support a cancer patient!

There is now way I could list everyone who has supported me, as I know I would forget someone.

But I want to make it very clear that I am grateful for each and every one of you. At first I was a

little hesitant about accepting dinners, rides to chemo and such. But I now find that these acts

of kindness are critical to my survival.

Obviously my family is top on my list. My husband Doug has been the rock for me throughout

this journey. He shows his concern quietly and yet can motivate me to FIGHT ON! I often

wonder how different our life would be without this cancer. As empty nesters, would we be

traveling more and doing different things? I know for a fact that he wouldn’t be stuck at his job

and would be able to venture off onto something else. Being tied down to my health insurance

issues have kept him at a job that he doesn’t love.

Both Alison and James have been troopers. They have known me to have cancer since they were

very small. As adults, they look at it differently. I want to be here for them.

Mom and Dad have had a lot to deal with and it saddens me that this cancer has spread to their

lives as well. As a parent, I can only imagine the pain that they have endured with my journey. I

would never wish this on either of my children.

My siblings Kathy and Steve have been there for me as well. My extended family has also been a

huge support. Nurse Claudia has been there every step of the way and I appreciate all that she

has done for me. Chemo visits, answering questions, and accepting my low times during this

journey to name a few. Both Gloria and Elmer keep me in their prayers and that means so much

to me.

But beyond family, the support I have received from close friends, acquaintances, bible study

friends, work colleagues, people from my past, Facebook friends, neighbors and more has been

so unbelievable!

Here is a list of just some of the support I have received:

• Prayers-‐Top on my list, I believe in prayer.

• Dinners-‐Important for my family and the break that I need from fixing dinner for them.

• Chemo Rides-‐I enjoy the company and not having to park that big car of mine in the

parking structure!

• Text messages-‐Make me smile! J But don’t always expect a return call right away!

• Voicemail message-‐ Make me smile! J But don’t always expect a return call right away!

• Flowers-‐Brighten my day!

• Walks-‐One of my favorite things to do.

• Visits-‐Short visits are good as I get tired, but appreciate the time.

I know there is more but these pop into my head quickly. And having chemo brain, I take what I

can get and run with it!

KICK ASS!

I found it interesting that so many people would say to me “good luck” when I had my chemo

sessions. I guess it seems like the right thing to say. However, I found that there wasn’t anything

lucky about having cancer so I wasn’t quite sure how to take the phrase.

At one of my sessions, Jody and I came up with a new mantra…Kick Ass! This became the new

phrase I liked. I let my peeps know and they were happy to change the phrase. So whenever I

went to chemo and radiation, I felt like a fighter and I was going to beat this cancer!

HAIR LOSS!

Some people think that the more you do something or experience it, it become easier! Well not

for me. I have lost my hair four times and each time it has been devastating! Call me vain but

losing hair is like losing your soul, identity, everything.

I usually wear ball caps, hats and scarves. But I do pull out the wig when I go out or to work. It

just makes me feel better. I don’t have to stare at everyone else’s hair with envy!

At home, I just like to bear it all! Feels good but in the winter, my head gets so cold! Knit caps

are a must!