What's Next?

BEGINNING:

My story starts 7 years ago when I was 15. I came home and my mom sat me down with my little brother saying she had to talk to us. She had found a lump on her chest and saw a doctor a while ago. Earlier that day she had seen him and he told her the lump was breast cancer. Chase and I sat there for a second before getting up and hugging her. Being only 15 and 13 and never having any experience with cancer within our small circle it had to be explained to us what all it entailed, meant and how things would change. We were concerned more so of the unknown but we weren't prepared for what really happened.

My mom began preparing for chemo a month later. Her veins were too small so a port had to be inserted into her chest for the chemo to be delivered. The first surgery failed and the port slipped a few weeks after being implanted. After having the surgery a second time she began the treatments. At first we didn't notice the difference because she managed to hide it. She was physically sick all the time and rarely ate but she still tried to be the person from before. Her hair, eyebrows and eyelashes fell out, she started losing weight but she still tried. Eventually she had to hire women to help around the house because she was too weak to even cook. Chase and I tried our hardest to help but being teenagers we were limited. I couldn't even drive my mother to her chemo sessions.

After the chemo my mother began radiation therapy as an extra precaution since the diagnosis revealed the cancer to be aggressive. She started recovering at this point, gaining some weight back and cooking for us so we thought everything was going to be alright.

Wrong.

A month after her radiation therapy ended my mom found out the blood work she sent out for gene testing was positive for BRCA1. The oncologist had recommended it since her mother's sister had died of ovarian cancer and one of her sisters had had breast cancer twice. Once again Chase and I were sat down and told what had happened and what will happen. Chase and I were in shock to say the least. We both tried to understand what it meant and we thought we did but realized we could never imagine what happened next.

After months of research, meetings with doctors, survivors and support groups my mom decided to have a double mastectomy and hysterectomy with reconstruction using her own tissue. She and my dad found a doctor in New Orleans and made arrangements. They went down a few days early to enjoy the city and try to relax while Chase and I were left with our paternal grandmother. In my opinion it was the worst choice in caregiver since the woman is as cold as ice offering little sympathy or support to us. Instead we were put to work doing everything from trimming bushes and mowing the lawn to getting on a ladder and dusting the crown molding since "keeping busy would distract us."

A week and a half later my parents came home. Chase and I were anxious to see our mother, wanting to know that she was ok and that things would change. Again, wrong. Our mother was covered in stitches, bruises and had tubes coming out everywhere to drain fluid. She was heavily medicated and after very careful hugs she had to go straight to bed.

Her recovery was long and hard. What little weight she had gained back was lost and all she could do was stay bedridden. She was in constant pain and needed help just to get up from a recliner we rented for her to rest in since a bed was too difficult.

It was during this time that I decided I had to know. I had to find out if I would suffer the same fate as my mother.

Unfortunately I had to wait about 5 months until my 18th birthday before I could. Some law dictated that I wasn't mature enough to make the decision of having gene testing. So I waited, caring for my mother and attending school. I was in many AP courses including biology and chemistry; wanting to learn more about genetics and what could be done with DNA. One week after my birthday (November 30th), I was in the doctor's office with a needle in my arm, praying that I wouldn't get the news my mom did.

They weren't answered.

Two weeks later (a week before Christmas), my oncologist called and asked if it was a good time. I said it was (even thought I was with a friend because I had to know) and said calmly that the results were positive. I don't think I answered for a while but I thanked him and hung up. My friend knew what was going on and simply hugged me, saying everything was ok. Not a minute later my phone rang again, this time my hysterical mother. She took the news really hard but I kept telling her I was ok. At the time I was and stayed that way for about a year.

CANCER SCARE 1:

After the diagnosis I was put on a plan to get an MRI three times six months apart to establish a base line for mammograms to be compared to which would be done yearly.

The first MRI was fine. I was nervous since I'd never had one before but nothing else. I blacked out for a second when the contrast was injected but otherwise it was uneventful. My mom cried the whole time.

Six months later, May of '10 (I was 19) I had my second MRI. This time I got a call back from my oncologist saying we needed to do a biopsy immediately. There had been a few spots on my first MRI that were questionable but after the second MRI one spot had changed significantly.

A week later I was in the car being driven to a hospital two hours away. It was at that point everything hit me. I could have cancer. I'm 19 years old and I could have cancer. Everything my mom went through came rushing back and I went into hysterics. I was crying so hard from fear and self pity my mom had to pull over and comfort me.

At the hospital I was treated by the kindest people I had ever met. I knew the nurses were scared for me, shocked even that they were doing surgery on a 19 year old who could have breast cancer but they smiled and made me comfortable, talking about anything and everything just to make me smile and forget what was going on.

The surgery was suppose to be done using an ultrasound but after the doctor had trouble locating the mass (my breasts are 36 DD and very dense) an MRI machine was prepped. I remember that I had headphones on with a local radio station doing a talk show while I was in the machine and the doctor operated. At one point I started laughing, scaring the nurses. I said that a comedian was on the radio but really I was so scared I couldn't stop laughing. The doctor missed the mass the first time he stuck the needle in so he had to try again. He got a sample and stitched me up after inserting a tag to identify the spot. I left the hospital wrapped up as if my ribs were broken.

For two weeks I needed my mother's help with basic things. I couldn't dress myself, wear a bra or even change the bandages on my own. It took only a week for the doctor to call back saying the results were negative. At that point, thought, I started asking myself if this was worth it. How many times would I go under the knife for cancer scares before losing my breasts? What about my ovaries?

I stopped dwelling when a friend of mine, even after listening to me ramble about this asked me to date him.

JOHN:

My time with John holds some of the best memories. Going to his brother's wedding, camping, showering me with random gifts, standing up for me when a college roommate got hostile...he never left my side, always there and reminding me that I wasn't alone and that he loved me. My fear of being alone because of this gene were gone because of him. He knew everything I would go through and even my decision not to have children because I refused to curse someone else with this gene yet still stayed by my side.

A week after our two year anniversary, this past September, he got up and walked out the door abruptly. He didn't offer anything until two days later when he called and said he "wasn't happy anymore" and wanted to breakup.

I was shocked, having not clue that he wasn't happy or that breaking up had even crossed his mind. For a half hour I begged and pleaded on the phone offering everything I could to make him stay. In the end he just said goodbye and hung up.

NOW:

Since then I've spiraled into major depression. Every doubt and worry that John kept away has come back screaming. I'm not even afraid of the gene and what will happen, I'm afraid of being alone.

I'm 22 years old and in extreme doubt I'll ever find someone. I feel like no one will want someone like me. Someone who for their 30th birthday will go under the knife to lose both breasts (decision by my oncologist since my mom's sister got her first round of cancer at 34) and has opted not to have children. I have no one to talk to because no one can understand what I'm going through or the decisions I have made. When I say I've decided not to have children women are horrified, thinking I'm being irrational. Am I? I feel like having a child knowing that they have a 50% chance of getting my curse would be the most selfish thing. Don't get me wrong in thinking I don't love children though. It pains me every day to see mothers with their little ones and dads with theirs looking at them with such pride and knowing I can never have that or give that to someone. I'd offer everything I had and even sell my soul to smile down at a baby of my flesh and blood. I've also essentially given up on finding someone to love me since John left. I've tried going back out and dating but I've been turned down because I have too much baggage.

I'm looking for advice and comfort...My parents don't understand my decisions and I've lost many friends because of my depression. I feel so alone and lost right now...

Thank you for reading my story,

Taylor
tricksandtreats tricksandtreats
22-25, F
2 Responses Dec 6, 2012

Hi Taylor,

You have been through so much. I think I can offer you some positive steps to take. I found your blog post because I am also brca1+ and I get alerts from google about brca posts. In case you don't already know about it there is a wonderful organization called FORCE (Facing Our Risk of Cancer Empowered). http://www.facingourrisk.org. Here is their mission statement:

FORCE is the only national nonprofit organization devoted to hereditary breast and ovarian cancer. Our mission includes support, education, advocacy, awareness, and research specific to hereditary breast and ovarian cancer. Our programs serve anyone with a BRCA mutation or a family history of cancer.

Please check out this web site. There are message boards including one dedicated to young people like yourself. There is also a helpline: 1-866-288-RISK (7475).

I have been very lucky. I do not have much obvious family history and found out about my mutation in a pretty random way at the age of 53. I have never had cancer. But when I did find out I was shocked, depressed, terrified, in great need of support, like you and no one in my family understood what I was going through. I saw a psychologist and eventually had all the surgery like your Mom. Having the surgery prophylactically was not as bad as having cancer. It is almost a year now since my bilateral mastectomy and I am doing great. I love to run and my goal for my 55th year is to run a half marathon. So, life can still be good despite all the pain involved in this gene mutation. Now you have knowledge and can do what has to be done to ensure your health and a long life.

It's not surprising that you feel the way you do now about having kids. Things may change for you in the future. Medical science is advancing and there are new options now and there may be more in the near future. If you want to have kids and be sure they don't have the mutation you can have pre-implantation genetics -- read about it here: http://www.facingourrisk.org/info_research/fertility-parenting/issues/index.php. I know not everyone believes this is ethical but I just wanted to let you know about it.

I hope I have been helpful.

--from a BRCA sister

Taylor sweetheart,
I totally get that you have every right to be sad,depressed,angry......god,you have already been through so much and your barely an adult. Right now maybe it is best that you don't have a boyfriend because really you have alot of stuff to work through.You have your fear of being alone and the fear of the future along with there has to be some anger and feeling life is unfair to you.Not to mention the damage John has done leaving the way he did.
I think the best thing is for you to get some serious counseling to deal with these issues in your life.I went through a few really bad depressions and lost all my friends just because I was negative all the time.But then why shouldn't we be negative when life sucks right? The decisions you have made doesn't mean you and the right person can't adopt or even do the petrie dish thing to check genes before an embryo is implanted or something.Who knows what science will come up with in the next decade? The important thing is you.You need something to change so you are ok being alone. Only when that fear is gone can you have a healthy relationship where you aren't clinging on for dear life and counting on your partner to keep you safe and happy.That is too much to ask of anyone.It is for you to do ,yourself. Then friends will stick around,guys will be attracted again.You are sick in a way and need to heal but you will,you are still very young with lots of time.Don't let fear take over your entire life....
I wish you the very best as you get the help you need.You have a wonderful future ahead of you if you make it that way for yourself.:)