Cancer and its grip on our family

BRCA+ 1 definition - BRCA1 (breast cancer 1, early onset) is a human tumor suppressor gene, which produces a protein, called breast cancer type 1 susceptibility protein. It is found in the cells of breast and other tissue, where it helps repair damaged DNA, and destroy the cell when DNA can't be repaired.
Cancer as defined by the Merriam-Webster dictionary means a : a malignant tumor of potentially unlimited growth that expands locally by invasion and systemically by metastasis b : an abnormal bodily state marked by such tumors

Cancer...what a ugly word. It is one of the most common words used in my life. I hate everything about that word. I hate everything that it has done to my family and friends. I hate that stupid 6 letter word can mean so much pain.

I was born June 13th 1981 to Leslie Thomas (tom) Harrison and Karen Marie (Anderson) Harrison in Shakopee,MN. 5 fingers and 5 toes and completely healthy. My parents had no reason but to be happy and excited for there new little baby girl. The first few months of a new baby's life is always a joyful time with some restless nights sprinkled in of course. I don't recall all of the specifics but within the first six months of my life my mother received devastating news that she had developed breast cancer and that it was  at stage 4. This meant the tumor in her breast had spread to nearby lymph nodes and was on its way to spreading to nearby organs. They believed she had first developed the breast cancer when pregnant with me in 1980. My mother would have been 28 when the cancer first started growing and she was 29 at the time of her diagnosis. According to the American Cancer Society in general, women who have advanced breast cancer at the time of diagnosis live approximately 18 months after diagnosis (median survival rate). In 1981 that survival rate was even less. Mom was given the options for surgery and chemotherapy but was also told that stage 4 is a very advanced cancer and that although she should fight she needed to know the realistic stats on stage 4 cancer. Having just had a newborn baby months earlier and a 7 year old son and 9 year old daughter at home mom was not about to become a cancer death statistic. Raising her three children with my loving father mom went through surgery to remove her cancerous breast and lymph nodes and followed up surgery with chemo treatments. 1983 came with great news. Mom had beat stage 4 cancer! She would live to see her kids grow up. I don't have all the details but shortly after my mom was diagnosed with her breast cancer in 81 my maternal aunt Jan was diagnosed as well with cancer. Thank god she too was able to beat it and was able to go on to watch her son and daughter grow up.


In 1994 my mother was once again diagnosed with breast cancer. This time it was in her other existing breast. They found it earlier on then the cancer in 1981 and after going through nasty old chemo mom was able to beat breast cancer again. I remember her specifically saying well I thought it was over when I beat it the first time but now that I had it both breasts and beat it I'm glad its all over for good now.

In the summer of 2000 mom started having lots of abdominal pain. After a few doctors appointments and thinking she had a really nasty flu mom found out that she had ovarian cancer. She went through surgery to have the tumor removed and a complete hysterectomy. Mom also decided at that time to have genetic testing done to find out if the cancer recurrence was due to a gene mutation. She found out she was positive for the BRCA 1 cancer gene.  At the time of her surgery her surgeon sat us down and talked to us about cancer and the recurrence rate of it when you have the gene. I vaguely remember her telling us that she was confident she had removed all of the cancer and that with chemo mom would be around to see her grand kids grow up. She said that there was a chance she could develop it again and that in a case like that she would more than likely still have another 10 years. She urged my sister,brother and I to get the genetic testing done. My sister Angie immediately made the decision to test and found out she was not BRCA positive. I was 19 years old at the time and even though I had already had a baby I was not ready to find out my test results. From the minute I found out about the gene I had a sick feeling in my stomach that I had the gene. It felt as if I had always known. I can even remember being a young girl and thinking about what it was going to be like when I got cancer and didn't have breasts. I was very young at that time as I can remember not be developed at all but I would put my moms bra on that had the fake breast attached to it. Now that I think back to that time it makes me tear up. I was always so scared of losing my mom and at the same time believed that just because she had cancer I would too.
While mom was going through chemo we got news that my maternal cousin Karine had been diagnosed with breast cancer. She was 26. Mom and Karine both went through there surgeries and chemotherapy and after a year of chemo treatments moms cancer went in to remission. My mom and Karine were both very strong woman who never wanted to be a burden on anyone. They never wanted to show the pain they were obviously going through with there chemo treatments. Most people wouldn't even believe they had cancer. They were fighters.
A few days after new years 2003 Mom had been feeling sick and was having a lot of severe abdominal pain. I had just moved back in with my parents after leaving my husband a few days after Christmas. I was getting ready to go in to work at my overnight job when mom came down stairs saying she was really not feeling well and couldn't get comfortable. It had been a few days of her not feeling well. I urged her to go in to the er and see if there was anything they could do to reduce the pain. I told her I could take her if she wanted and she told me it was OK dad would take her in and that I should go to work. I went in to work and completed my shift. On my way home I got a call from my sister telling me that mom was going in for surgery and that I should get some sleep and then come up and see her. They wanted to open my mom up and see if her cancer had grown back. I woke up to another call from my sister. During the exploratory surgery they found that her cancer had grown back and in fact was the size of a soccer ball. It had intertwined itself around her small intestines and bladder. They ended up having to remove both her bladder and part of her intestines. She would have to have a bladder and colostomy bag attached indefinitely. This news hit hard. I took a while gathered my self up and headed to the hospital. Mom was in the hospital for a little over 20 days before they told us there was nothing else they could do. Chemo would be too hard for her go through and may only extend her life a few more weeks. They told her it would be harder on her then if she just let it take its course naturally. When someone is hospitalized and they are told there is nothing more they can do insurance will no longer pay for them to stay in the hospital. We were told mom would have to move to a hospice to live out her last few days. We were told she would probably only live another week and half.

There was some really hard days when mom was in the hospital. She went through several days of having hallucinations before they found out she was allergic to the morphine drip she was given for the pain. During her time in the hospital my brother,sister and I went to get tattoos in honor of my mom. A few days before we got the tattoos mom received a card from Karine who was still going through chemo. The card said Courage,Peace and Strength and it meant a lot to my mom. My sibling and I felt it was perfect. Mom was full of courage,peace and strength. Its what had got it through that last 21 years of on and off again cancer. When we got our tattoos we each chose one of those strengths that we felt mom had passed on to us. We got Chinese symbols of the strengths we chose. Angie got strength, Les got peace and I got courage. We had told mom that we were going to get the tattoos. When we went back to the hospital mom had a tattoo of a fake symbol drawn on her with kids written beneath it. It was amazing. Her love for us was so great. One of the nights while in the hospital I was sleeping in a chair next to moms bed. I was in and out of sleep watching over mom when I heard her quietly say..Its not fair. I moved my chair in closer to her held her hand and asked whats not fair mom? She responded back to me. "Its not fair your going to lose your mommy. You need your mom. I always thought I would be here to see you grow up to an old woman. I thought after I beat cancer when you were a baby that I had beaten it forever. You are only 21 years old and you still need your mom. I still need my mom and I'm 51 and shes been gone for several years. Your my baby. I need to be here for you. I need to be here for your babies. I don't want to leave you kids. I don't want to leave all of you. I love my baby and I don't want to ever not be here with you." Crying I held her hand tight and told her I loved her so much and I didn't want her to go. She moved her sore body over in the bed and told me to cuddle with her. I lay in my moms arms for the first time since I was a child. I lay there holding my mom tight and telling her how much I loved her and how I thought she was so strong and courageous.
A few days later we moved mom over to NC Little hospice. I remember her oncologist coming to see her before they moved her over to the hospice to say goodbye. Mom asked her whats next..will she see her again? Would she be on meds in the hospice? Dr. Bibi Khoratti explained to her that she wouldn't see her again and that she would be taken care of very well at the hospice. She told my mom how strong and amazing she was. How she had been one of her favorite patients of all time. How seeing how positive and strong she could be gave her so much fulfilment in her work. I remember my mom graceful accepting her words but I recall a look on my moms face. The look told me she just realized that even though she had been told she was going to the hospice to die and that she had been talking with all of us about it that this was the first time she was given the outright word that she wasn't going to beat this cancer.
Mom lived passed the two week expectancy they gave us. So many big news events happened while she was in hospice that we kept from her. We felt she needed nothing but positive news and happiness. My sister spent every waking moment with my mom at the hospice. We all spent a lot of time with mom. I wish today I would have spent even more time there with her but I was in great denial over the fact I was about to lose her. I felt like everything I knew and felt comfort in was caving in. My mom was my best friend. The time spent there left me with more great memories of mom. Great conversations and great stories. February 20th I had just left the hospice and went home to get in a shower and go visit with friends to get my mind off things. I had just picked up my friend when I got a call from my sister telling me that mom was freaking out and that she was asking for me and wasn't going to calm down or rest until I got there. I dropped my friend off and sped my way back to the hospice. My mind was spinning. When I left she was all smiles and was doing great. In fact it was hard most of the time she was in hospice to accept she was dying because she was so upbeat and positive. When I arrived back my siblings and dad looked like they had been hit by a bag of bricks. I remember my sister crying and waving me to hurry in the room. Mom told me to lay next to her. I laid next to her and held her hand. She smiled at me and told me "first off I love you. I love you with all my heart and I am so proud of you. You have always made me proud. You gave me a beautiful grand daughter and that Gabi had made life more enjoyable for her to live." She then went on to tell me. " Gabi gave me a reason to get out of bed when I was feeling weak and tired. She made the cancer easier to fight just as it had made it easier to fight when you were a baby." Mom kept a smile on her face and looked at me and said. "It's my time. I'm ready to go. I'm ready to be with god. I'm ready to see my mom and everyone else that has passed on. I'm ready to sit down with grandma and play a game of  SKIP-BO and go camping at the lake in heaven. I'm going to close my eyes and go to sleep. I don't know when I will go or if I will wake up again but I know its my time to go and Ive made my peace. I'm going to go to sleep now. If i wake up and struggle to pass on. Ill have to figure out a different way to go." She laughed. She said maybe I will have to be like one of those extreme dirt bikers and go out that way. Either way its my time to go." It was so mom to put in a little joke. She was trying her best to be the silly lady she always had been. She was trying to make it easier to say goodbye. She laughed at her joke smiled and said. I love you. I'm always going to be with you. Take care of that grand baby of mine. Ill miss you. She kissed my cheek and she closed her eyes. She woke up a few times over the next day and half and would get a very annoyed look on her face. She would sometimes make a large huffing noise along with a face and then close her eyes again. She never said anything again to me after that night. I didn't leave the hospice until shortly before she died. I watched her body shut down. I felt her body getting colder and listened to her body make strong moaning noises that we were told was very normal when a body shuts down. My dad couldn't take it any more. He went home. About 20 minutes before she passed I was ready to lose my mind. I couldn't take watching my mom die. I had to get a breath of fresh air. I left the hospice and drove a few blocks away. I was planning on coming back but I need to compose myself first. I got a phone call. The nurses had said it was a matter of minutes. Mom was about to die and if I wanted to be there I needed to head back. My moms moaning had gotten louder and it had felt like she was already gone. It was only her body making noises as it shut down. The nurses suggested my brother play her some guitar as she had always loved his playing. He played her some music as I drove back. She took one last smile and her last breath and she passed away February 22, 2003. I didn't make it back in time. There is a part of me that hates that I wasn't there and another part that tells me I couldn't have handled it. When I got the call she had passed I headed home. Someone needed to tell dad. I remember as I was pulling in to the driveway he was walking outside to put the dog on her leash. I took a deep breath and opened up the car door to tell my father the hardest thing Ive ever had to say. I just walked up to him crying. He said whats wrong. I hugged him and told him Dad..moms gone. He hugged me and started crying really hard. He was in so much pain. He gathered himself up. We locked the door and headed back to the hospice so he and I could hug her one more time, only this time it was just her body, she was already gone. The hospice called the funeral home to pick up her body and told us that they could pack her things up for us and we could pick them up tomorrow. We decided that NC little had been her home for the last part of her life and that we would gather her things up. It was hard to do. Moms body was still there and I felt her body cold as ice and watched as color took over her eyes. Its the hardest thing in the world to go through watching someone pass away. We had a memorial service in Eden Prairie for her and a funeral in her hometown of Cook. She was buried in spring at the same cemetery that my grandmother and great grandparents were buried in. Its a small little cemetery tucked away in the woods of Cook,MN. Its very peaceful there. Many years have gone by and it still feels like it was just yesterday she passed on. In February of 2006, three years and one day after mom passed away my cousin Karine lost her battle with cancer as well she was 34.

All the pain that cancer brought our family left us all feeling like we needed to be smarter about watching out for health. This is easier said then done though. Mom and Karine's battle and passing did leave us with more information on how to screen for cancer and to be aware it can happen at any age. My aunt Jeannie started yearly screening including have the cancer marker test known a the ca120 done. My mom had encouraged her to do this so they would always have a base line to go by just in case. In the summer of 2008 I had been following a story of a young woman by the name of Amy Taylor who had gone through cancer when she was pregnant with her child. She was young like my mom was when she first had cancer. Amy was making video tapes of advice,stories and conversation for her kids just in case she didn't make it. She wanted to be able to have those times she wished her kids happy birthday, gave her daughter advice on her first boy crush. She wanted her kids to have a message for there wedding day. She knew it was important. She even bought gifts in advance and drew them pictures and other special things for them to have. When I started following Amy's story I had a 9 year old, 7 year old bonus daughter ( my fiances daughter} and an almost one year old girl. Her fight and desire to always be there in someway for her kids left me feeling like I needed to do what I could to be there for my kids. I needed to go get the genetic testing done. I needed to know because Knowledge is power. If I had the gene I could do things to help me live a long life with my kids and fiance. Almost right after I made this decision in August I found out my other maternal aunt had been diagnosed with Fallopian tube cancer. This was divesting and both awakening to our entire family. As if losing Mom and Karine hadn't been enough we were not about to lose Aunt Jeannie. I went in for testing and found out after what felt like the longest 3 weeks of my life that I did in fact have the gene. Aunt Jeanine went through her surgery and did testing as well and found out she too had the BRCA 1 cancer gene. After finding out I had the gene I immediately wanted to do what I could to be here always. While waiting for my surgery date my other maternal aunt Joanne had a mammogram and it was found she had early stages of breast cancer. They tested and found her positive for the gene as well. She made a decision to have both her breast removed as well as reconstruction. She went through her surgery and was able to not have to go through chemo treatments
. I had my prophylactic double mastectomy and reconstructive tram flap surgery on February 25th 2009. The surgery removed both my healthy breasts and used stomach muscle,tissue,fat and skin to reconstruct the breasts. The surgery was over 10 hours long as there was some issues with my blood vessels not wanting to connect to the new tissue. If the blood vessels would not connect there would end up being necrosis of the tissue. After several attempts my surgeon was able to get the vessels to take. My sister and fiance had been there with me the entire time ( well waiting in the waiting room). I don't remember a lot from the few days after surgery but I do remember the tragedy that struck my sisters family while she was at the hospital with me. I remember laying in bed when my sister got a call from her husband. I was still somewhat out of it when I heard my sister scream WHAT! ARE YOU SERIOUS! NO! She was trembling,crying as my brother in law tried to tell her that he had just found out that his dad had died in a tragic car accident. My brother in laws brother and and dad were headed to go hunting when they lost control of the car. Papa Nick as he was called by my nephew passed away in the accident. Second to seeing my sister cry in pain when mom passed this was the most emotionally distraught I had ever seen my sister. The nurses came in to see what was going on and attempted to calm my sister down. My fiance Tim brought her to my brother in law. It was so upsetting to lose such a great man and see my sister and her family go through another loss. Nick still is missed.

I was released from the hospital a week after my surgery. The day after being released I was in really bad shape with the worst sick feeling I have ever felt in my life. It truly is beyond words. I was running a temps that would go from 104 to 97 degree and back up in matter of hours. I went back to the ER, was admitted and given antibiotics and fluids. The next day my surgeon decided he wanted to go back in and take a look at what was going on. They found a massive infection that was in the process of spreading pretty rapidly. They tested the infection and found it to be a MRSA staph infection. They did there best to clean up what they could and put in a wound vac to remove more of the infection. I was put on INTENSE antibiotics. I ended up having 4 more surgery's in attempt to clean up the infection. I was in the hospital for a month before I asked to leave to be able to be home for my daughters 10th birthday. I was sent home with a port in my arm to be able to receive antibiotics. I was on the antibiotics for 2 and half weeks  12 hours a day at home with a nurse visit every two days It was a lot to go through but having the surgery greatly reduced my risk of developing both breast and ovarian cancer. Sickness and slow healing in all it was worth it. I will be here for my daughters. I will be here to see them get married,have kids, grow old. They will never have to know whats its like to be without a mom.
Since my surgery in February of 2009 both my aunts have had reconstruction surgery and complete hysterectomies. All of my moms siblings have tested for the  gene and we have found out that all 6 siblings have the gene. My aunt Jeannie's cancer went in to remission and then few amounts ago it reoccurred in her lymph node. She is currently going through chemo again and we have every reason to believe she is going to beat this cancer. Out of 16 cousins in my family 6 cousins have tested for the gene and 4 of us have the gene including my cousin Karine.Jan 5th 2011 I had surgery to have a complete hysterectomy. It was one more step in the direction of doing everything I can to be cancer free. It is my hope to encourage the rest of my family to test for the gene. It is such an aggressive gene in our family and there are so many great tools out there to reduce cancer risks and so many great support groups. The two biggest groups of support outside of family that I have had with this gene is the group F.O.R.C.E ( www,facingourrisk.org ) and the BRCA Sisterhood page on Facebook that was started by a fellow BRCA positive sistah Teri Smieja ( you can follow her blog at  http://terisblip.com/) 


Having a support group and being able to speak and reach out to others with this gene has helped me feel that god has given me this gene for a purpose. Every time I can give a fellow BRCA sistah or brother an encouraging word it helps to make me feel these tragedies are also somewhat of a gift. If you know anyone who has gone through cancer and may have a genetic history please encourage them to do the testing and to reach out for support from one of these groups. The one big thing I have learned from all of this is that Knowledge is POWER.