Today I was at my computer editing some photography sessions. I play all kinds of weird music when I edit. Today was Women of Country on Pandora. A song came on that I had never heard before. It was by Martina McBride. Here is the link. http://www.azlyrics.com/lyrics/martinamcbride/imgonnaloveyouthroughit.html The song hit me unbelievably hard. I cried. I signed on the Facebook to get my mind off of it only to find the "the Pink Ribbon page had posted a picture that said "Don't be ashamed of your story. It will inspire others". I have several people at church that I feel are my prayer warrior friends. I think God puts core groups together, people that pray the same, people that can pray together. There are some people that I do not pray with and do not feel comfortable praying with. Recently I emailed two of my church friends.
This is the email:
I am sending this email only to the two of you. I care for both of you so very much. I don’t always know why God sends people to be in my life, but I’m thankful for both you. I feel a special connection to you both for a multitude of reasons that I can’t always grasp. You are my brother and sister in Christ. God does not discriminate, and regardless of our wide array of life experiences, He has brought us together. I think that we were all brought together to love on each other, learn from each other, and pray for one another. Our God is so cool. J The Fonz ain’t got nothin’ on our God.
I wanted to share something with you both. I have felt lead to share in Sunday School a couple of times about this, but I can’t get the words out. I know on several occasions I have started or mentioned a tiny piece of this and stopped. During these times, Ricky has gently reached over and grabbed my hand just to let me know he’s there. He has been unbelievably supportive. I can’t thank God enough for sending that wonderfully amazing man to me. I also can’t imagine making this walk without him. He helps me to be a better person. He calms my heart when I have fear. I know that God is in him because when I cry, he just hugs me. I can feel God holding me, and there is no need for us to exchange words. God is with me…with us.
When I lost my mother, my whole world was torn apart. It wasn’t just because I didn’t have a mom anymore. It was a million different things. It has been a rough couple of years for our family. Watching my mother try to breathe with the “death rattle” and seeing her last breathe in this world torn my heart out of my chest. I miss my mother dearly. She was so very difficult during the last year or two, but I miss “mom”. I miss the advice, the person she was, dancing to oldies while cleaning house, seeing her hug my children, listening to her stories…it’s those things that exist only in my memory now. When my mother was diagnosed with breast cancer, I was in shock, disbelief. How could this be? My father’s mother died from breast cancer at the age of 52. She met my sweet Chelsea only once. How could my mother have this terrible disease. It just couldn’t be. Period. For months I avoided the conversation. After a year, me and my sisters wanted her to get treatment, but chemo was not an option for my mother because of her MS (multiple sclerosis). She was already in so much pain with the muscle spasms that she unwilling to do chemo. My mother attempted suicide several times in her last year. It was in the last few months that she seemed to be “mom” again. I assumed she was getting better. She was convinced God was going to heal her. October of 2012 was the last time I saw my mother walk on her own. In November she was using a cane and sometimes a walker. By January, my mother could not walk alone even with a walker. Her risk of falling was too great. I watched her struggle. When we got the news that the cancer had spread to her bones, we were devastated. My mother had known for some time and had refrained from telling us kids. For about 4 months before she went “home”, she had an open wound on her breast where the cancer was so large that it had literally broken the skin. The hospice people would change her bandages, but Mom liked to do it herself. She was very modest. My mom’s life was always so very difficult for her. She crippled very quickly with the cancer in her already very tired body. She had been diagnosed with MS about 7 years before the diagnosis of breast cancer. It was so very hard to watch this disease tear her body apart. She actually got a hairline fracture on her hip from sitting on a toilet too hard. My mother was born to be a mother. She got pregnant with me at 15, shortly after her father committed suicide in their home. She ran away with me. She could have aborted me. I think sometimes about how much easier her life would have been without me. After my mom died I regretted things I had said, things I had done. I made her life so much harder than it had to be. It was not a purposeful hardship that I caused…I was merely growing in life, in Christ, and as a child with a very difficult childhood. The woman that I had caused so much strife, was dying. My mother was dying. My mother was leaving me. How dare her get sick! I was more mature. I was an adult, this was the time when I was supposed to be her best friend. The list of emotions goes on and on, from anger to pity. I know that God took my very sick and very tired mother “home”, but the hurt is still so very real.
I always told my sisters and my mother that I would never go in for a mammogram. I would just die of cancer if I got it. I recalled this later. I lost my mother on February 10th 2013. On March 10th 2013, I sat alone at Scott and White Hospital in Taylor waiting for my name to be called to go back for my first mammogram. I was an exception. My doctor had told me that they don’t do mammograms until you are 40, but I was an exception because of my paternal grandmother and my mother. Lovely. I sat in the waiting room. Alone. I wept. It had only been 30 days since I lost my mother. I wasn’t scared. I was a grown up, but my mother would have been with me if she could have. I may have caused a scene at the front desk because I really did not want to do this. The machine was down, and I may or may not have told the lady at the front desk that “that is not my problem. My mother died a month ago from breast cancer and she would want me to do this stupid mammo, but if the machine isn’t ready when I am then I guess I won’t come back”. Ah yes, I pity the people who have to deal with me in an emotional state. The machine was magically ready after a call to my physician. *shrugs* My name was called. I walked back to the horrible machine that tried to make pancakes of my breasts (Louis, I would NOT be comfortable telling you any of this if you had not been in the medical field so long). It was a horrible experience, but I did it. My chest muscles were sore the next day, but I did it. I had successfully had my first mammogram. The following day, I received a call from a doctor at Scott & White in Round Rock. The doctor was so wonderful. Her name is Cassie. She didn’t go by Dr. So and So. She used her first name. She informed me that there was a small spot they were concerned about and wanted to do a second mammogram. Really? I wanted to wait a few weeks, but I was told that it needed to not be avoided. I was encouraged to come in the next day. I had another date with that horrible machine that was surely invented by a man. They did another mammogram which was more painful since my chest still hurt from the last one. The spot was definitely present, so they did an immediate ultrasound of that area. It was small. 1-2 cm in diameter. I was instructed to come back in 6 months. They wanted to “watch it”. *blank stare* Watch it? What does that mean? Uhg! If there was any changes in size or shape they would order a biopsy. So, I was free of the breast torture device for 6 months! My next appointment was set for September 2013. When the time came, I decided to not go. Out of fear? Possibly. Cassie (the doctor I had previously spoken with), called to ask why I had missed my appointment. I didn’t have an answer. She said that she would like to see me in person. She would like to do a test. I went in the next day to do a genetic test. She wanted me to swish mouthwash and spit in a cup. I thought maybe my breath needed attention. That was not the case, as she informed me that she was sending my saliva to the Mayo Clinic to test for a BRCA (breast cancer) gene mutation. She said that about 95% of these come back negative, but she wanted to test anyway. She informed me that it would be 6-8 weeks for the results. A few weeks later the Mayo Clinic called me to let me know that my insurance would not cover the test. I needed to have 2 members of my family from the same side (maternal or paternal) that have been diagnosed with breast cancer. I only had one on each side, one maternal and one paternal. They informed me that if I wanted to do the test anyway, that it would be $3,000. They gave me a number to call once I had decided. I had a limited amount of time. I don’t recall now what that time frame was. I talked to Ricky and he said that we could go ahead and do it, but I didn’t want to spend that kind of money. We decided to not do the test and to just pray that God would be in control. A few more weeks passed and Cassie called to let me know that she wanted to do the test again. Apparently there are “rules” regulated by the American Cancer Society, and one of those rules had changed which would put me in a “testable” category forcing my insurance to pay for the test. Oh yippee. *rolls eyes* I went in again to spit in a cup, and again narrowly avoiding my fate with the boob deflation machine. Very shortly after that, I want to say a week later, I got a phone call on my cell phone. This is the conversation:
Me: Hello, this is Darla.
Cassie: Darla, this is Cassie. I am on vacation this week recovering from surgery, but the office got your results back from the Mayo Clinic. I wanted to call you personally with the results.
Me: Oh thank you! How very kind!
Cassie: Darla, you have tested positive for BRCA2 gene mutation.
Cassie: Darla, are you there?
Me: Yes (small squeaky voice)
Cassie: Do you understand?
Me: I think so.
Cassie: You carry a mutated BRCA2 gene which is a breast cancer gene. It is hereditary. It was passed to you. I would like to see you in my office when I get back. I have set your appoint for _____(whatever time she said).
That was as much as I remember of the conversation, though we talked for a bit longer. This was mid-November. How was I going to tell my family? How could I possibly tell them that I was BRCA2 positive? We just lost Mom. It hadn’t even been a year. This would be a tough blow to my family, my kids, my husband. They are going to imagine me dying the way my mother did. It was too soon to have this information. It was too much. I took a few minutes of personal time in the bathroom. I was at work. I looked into the mirror with all of the questions. I prayed for strength. I called Ricky. He was silent for a while. I whispered, “what do I do now?”. He said, “We. I don’t know what we do now. We will wait to see how your chat goes with Cassie on your next appointment.” I felt better. I had Ricky. I didn’t have to carry this alone. I told my family at Thanksgiving. My grandmother (Laura Townsend) insisted on going with me to the appointment. It hasn’t been very long, but I can’t remember if I told Granny before that. I can’t remember if the appointment was before I told everyone. It a blur. I just don’t remember.
Me and Granny went to the appointment to talk to Cassie. She told us that being positive for the BRCA mutation meant that I would have an 87% chance of developing breast cancer before the age of 70. I had 3 options.
1. I could wait and see if I developed breast cancer and deal with it if it arose. This would be continuing mammograms every 6 months.
2. I could take a breast cancer pill which would reduce the risk by 50%. That would bring it down to 43% chance before the age of 70.
3. I could have a double mastectomy (plus another procedure that I’ll explain below) which would reduce the chance of developing breast cancer to less than 2%.
I cried. She also informed us that this was hereditary and that my sisters and my children (including Brian) had a 50% chance of having this mutation as well. I could have passed this unknowingly to my children. Devastation set in. What kind of options are those?!? None of them involved rainbows and butterflies. My life would change forever from this point forward. I could sit and wait which was not an option for me. Taking a pill for the rest of my life to reduce my chances by 50% didn’t sound like a plan. I would still have a 43% chance of developing breast cancer. I would worry at every mammogram if this was the one where they’d find cancer. My mother died at 52 years old. How fast would cancer get me? What age would I be when cancer reared its head prepared to battle for my life? The odds weren’t good enough. A double mastectomy was the other option? That’s not an option. That’s owning defeat against a disease that took my mother’s life. My head was spinning. If that wasn’t enough, she also told me that regardless of what I decided to do that she wanted to removed my ovaries before I turned 40. Ovarian cancer and breast cancer are best friends…same mutation from what I understand. Since ovarian cancer is harder to detect, it’s safer to remove them. Without removing them, I could still not be in the clear. I could see the remorse in my granny’s eyes as she told me, “I wish I could take this from you. I wish I could do this for you.” Those words touched me so deeply. That’s what Christ did for me. He took the death I deserved. My grandmother wanted to take this from me, wash me clean. I love her so dearly.
After debating this, and getting mad about it. Ricky and I talked about it so many times. I talked. He listened. I went over all of the scenarios in my head what seems like a million times. Granny prayed for peace in my heart. Ricky and I prayed for peace and for God to lead us. I have had months to decide. I also managed to escape my March mammogram *whew*. Those things are really terrible. I did have my very last mammogram last week. The spot has remained the same which is excellent news. It will be the last mammogram of my life. I have decided to have a double mastectomy and have my ovaries removed. This decision was not based on the horrific experiences I had with the diabolical Boob Smasher. I am doing this because I will not lay down and let this disease take the quality of my life away. I will not stand still and wait to see if cancer develops. I will walk proudly knowing that my chances are less than 2%. I won’t have to dread every mammogram wondering if this is the time that they will have to tell me that I have breast cancer. The chances are so slim that I feel that I can live my life free of the fear of breast/ovarian cancer. The decision was easy to make when I decided that I did not want my children to see me the way I had to see my mother slip away.
Because of photography, my full time job, and the cost, I will be having this surgery done in January. They will cut from the bottom of the breast, and remove all of the tissue. They will insert bags of air with drain tubes under the skin. I will have these for 3 weeks (if I remember correctly). After that, I will go back in to have the bags and drains removed. That part will be done by Cassie. I feel good knowing that she will be the surgeon. I feel that she was sent by God. I’m not even sure how she became my doctor for all this. HA! Once the bags and the drains are removed a plastic surgeon will do the reconstructive surgery. I have not met her yet. I will meet her in November which is when all of my last appointments are before surgery. There will be another doctor (he’s kind of a nut) that will remove my ovaries while I am still under from the reconstructive surgery. I believe the words he said were, “and I’ll be in to pluck those babies out”. He seriously said that. His face was way too close to mine as he wheeled his chair into my personal bubble to explain the procedure. Weirdo, but nice guy nonetheless. *shrugs* I will be down about 2 weeks for each surgery. I think I’ll be down a week…they’re doctors, what do they know? J
I am not sure why I felt the need to tell y’all this. Just led to.
Thanks for listening. Emailing is just my way of venting, blogging, journaling…whatever you want to call it. J
I love you both, and I’m thankful to have y’all in my life. You’re my friends.
That was the email I sent out...It's easier to copy and paste that then to start from the beginning. Very few people know this. I think less than 20 people. Today after hearing that Martina Mcbride song, I cried. I think that I try to keep my brain so busy that I won't think about it.
Someone recently asked me if I was scared. Wow. What a good question. I had to think about it. Am I scared? Simply put: yes. There are so many questions that I have. Will I be able to keep my nipples? I know that if I do, that they will not have feeling. I won't have feeling in my breasts. Is that worth the exchange of lowering my risk? Oh heck yeah, without a doubt it's worth it. My chances will be less than 2% chance of developing breast cancer, and I'm whining about whether or not I'll have nipples?? Will my husband still think I'm sexy with mangled breasts that may not have nipples? I have never had a surgery. I am guessing it's going to be painful. I am sure it is. I will begin menopause when they take my ovaries. I am going to try it without hormones. Menopause at 37? That's scary. I read awhile back that there was a local support group for women who have had any experiences with breast cancer. I haven't. I don't fit in there, do I? I only have a mutated cancer gene and a high risk of developing breast cancer. My double mastectomy is just preventative. I will have mangled breasts because of the option I chose, not because cancer destroyed my body. I feel a little guilty of that. How do I know that the decision I am making is the right one? What is I don't do the surgery and I just wait? What if I never develop cancer? I have a 13% chance of not developing breast cancer. Do I take that and run with it? I feel so selfish asking these questions. I think of all the women that never had a chance. The mother who found out she had stage 3 breast cancer while she was pregnant. My mother who found out too late to do anything. The ladies (and men) who have to endure countless chemo sessions. How selfish am I??? Who cares what I have to go through? Who cares if I have nipples? So what if the surgery hurts? I need to put on my big girl pants and stand strong. This is the story I got. This is my life. This one is mine. I am thankful for each path I have ventured down to get to this point in my life. It hasn't always been pretty, but God was holding me the whole time. Comparing my story to other people's makes me feel selfish with my questions, and makes me feel insignificant in comparison. This is my story. This is the story that I got. I wouldn't change anything. I will never have an amazing story about how breast cancer tried to kill me, I will never be a heroic breast cancer survivor. I will just be me. The girl who was able make a choice before cancer reared its nasty face to me. Maybe that's exactly who I needed to be. I will not stand and wait to see if I'm strong enough to battle breast cancer. My mother was much stronger than me, and she didn't win.
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