This month marks my fifth anniversary since my diagnosis of breast cancer. I really don’t know how I feel about that. I have never really let myself feel anything else but that I had to beat it. There were so many I had to be strong for. But now I think it is time I write about it and let myself be honest.
When I was nineteen I felt my first lump. I was so scared. I made an appointment with my doctor immediately. My doctor assured me that it was a fibroid and nothing to worry about. I started doing my self breast exams and always wondered how I would know the difference. I would ask doctors and they would tell me that I would know. When I was about twenty-five I was told that my paternal grandmother had died of breast cancer. Some would say I became OCD about my breast exams. When I was thirty I had my first mammogram and when I was thirty-five I felt a lump that did not feel right and went to have it checked out only to be shrugged off and told that it was just a fibroid. So feeling like I was just being paranoid I kept up my self exams and did not pursue my concerns about that lump. But soon after my fortieth birthday while in the shower I felt a lump that just did not feel like it should and felt as large as a walnut. I was having some other female issues and decided to make an appointment with my family practitioner. When I saw him he said I really needed to see my gynecologist. I made an appointment and this time I made it with someone I knew would listen to my concerns and not make me feel like I was being paranoid. I talked to him and he suggested we do another mammogram and he felt that I had another fibroid but we needed to check it out. He told me that I needed to point it out to the technician when they did the mammogram. The test was scheduled for six weeks later. During the rest of the exam he discovered a large tumor in my pelvic wall and that began a long list of test and biopsies. All the test came back inconclusive. The only thing that was definite was that it was between 15 an 18 cm in length and 8 cm in diameter. My doctor and all his colleagues he consulted with had never seen anything like it. I was sent to a specialist out-of-town. I was scheduled to have surgery to have it removed. A week before I was to go into the hospital for surgery I went into have my mammogram.
As I sat in the waiting room covered in a paper gown, I wondered if this time would be like the rest and it would only be a fibroid. As the technician smashed first one and then the other breast between those cold metal plates I felt numb. Most women speak of how uncomfortable it is but in all honesty I did not notice. My thoughts were on the surgery I was schedule to have in a matter of days. The technician came back and informed me that they did not see anything on the scan and wanted to do an ultrasound since I had definitely felt something. I watched her as she rolled across my breast where I had indicated the lump. I was then told to go wait in the waiting room while the radiologists looked over the ultrasound. When she came back out to get me and told me that the radiologists himself wanted to redo the ultra sound I knew something wasn’t right. The radiologists explained to me that he was concerned because I had all the markers they look for. The two I remember the most were that it was solid and that it was irregular in shape. I don’t remember getting up off of the exam table and getting dressed. I do remember sitting in the waiting room while they made an appointment for the next day for a biopsy and noticing how little info there was on what to expect next in the brochures they had. As I walked out of the hospital I called my mom.
“Moma, you know how they say God doesn’t put on you anything that you are not strong enough to get through and that doesn’t make you stronger? Well, I think he has me mixed up with someone else.” My mom started making arrangements to fly in to be with me for my surgery and to be as much support as possible. My husband headed home. Two days later I sat across from my doctor in his office as he told me and my husband that I had invasive lobular carcinoma. My first thought was how was I going to tell my children. My youngest had just turned sixteen and he was probably the hardest to tell since one of his friends had lost his mother to it the year before. I realized I had to be strong for everyone and keep a positive attitude. I could not allow myself to think negatively. My doctor scheduled me an appointment with a breast specialist for the next day. We had to move fast to make a decision about what was going to be priority the removal of the tumor from my pelvic wall or treat the cancer first.
My first appointment with the breast surgeon was very informative. I learned that there are many different types of breast cancer. Mine was a slow-growing. It involved the mammary glands. I learned your breast are made up of fatty tissue, muscle and that the mammary glands are nodes grouped together like a cluster of grapes. One of those nodes had developed into a tumor and was cancer. That if I was to have breast cancer the form I had was the kind to have and that it was a miracle I had discovered it in a self exam. Most of the time when a woman is diagnosed with this kind it is advanced because the majority of the time the mammogram will miss it until it is 2cm or more. It was decided that my surgery would continue and that we would address the cancer after I recuperated from this surgery. The tumor was benign in my abdomen. The biopsy of the tumor in my breast showed that my cancer was hormone aggressive so I chose to have a hysterectomy while they were removing the tumor. I spent ten days in the hospital.
I like to say I am blessed. I had time to consider my options. Many don’t understand some of the decisions I have made and how could they when they are not the ones that have had to make them. My doctors gave me all my options and I explored them all. I looked at what I could and could not live with. The one thing I knew was that I could not let fear be a priority in my life. I had a breast MRI that showed another tumor in the same breast. So my options were limited to a mastectomy of that breast or a bilateral. I chose the bilateral. Two months after I was diagnosed I went in for surgery. The pathology report and lymph node biopsy showed that I did not have lymph node involvement or vascular involvement. I chose to have reconstruction. Only instead of being a double D I chose to go with a size C. I always wanted a reduction. My brother joked that I always had to do things to the extreme.
After surgery I saw my oncologist and was put on arimidex. I was told this was to help stop the rest of the hormones in my body. Even if you have a hysterectomy your body will still produce estrogen and progesterone in small amounts. I was to learn later on that arimidex is also a small dose of chemo. Within days of taking this I started having side effects. The only thing I could eat that did not taste like metal was fruit and some vegetables. I could not sleep, was vomiting and was having anxiety attacks. Before I knew it I was taking four more medicines to counteract the side effects of the one. But the worst side effect was the inability of my body to heal. My incisions were not healing like they should and I developed a staph infection. I was hospitalized and the implants removed til my body was completely healed from the staph infection. I started back on my arimidex a month later and another side effect developed. Bone pain! This is probably the most debilitating side effect of them all. I could not get out of bed and nothing helped with the pain. I discussed with my doctor the benefits of me taking this medicine and he explained that with all the preventive measures I had taken already that it was basically like talking a bucket full of water and adding drops of water to it. I chose quality of life. What use is it to take a drug that will not make that much of a difference only to have the quality of your life diminish? I started my reconstruction again a few months later with expanders. Basically they stretch the skin and prepare your body for the permanent implants. By this time I had six surgeries so once I had my last fill on the expanders I decided to take time off from surgeries and wait to have the permanent implants put in.
In the meantime I returned to work driving over the road again and tried to move on with my life. My family and friends moved on with their lives. I talked less and less about my experience with cancer. I felt like my family was uncomfortable with me talking to others about it. I started keeping it all inside and not telling others my story afraid I might offend someone. I even had someone say that all I had to do was get it cut out and get over it. This was a nurse saying this. I had people looking away from me when they found out I was a survivor. I felt and still feel like people are afraid of me.
I said I was going to talk about my feelings. Well, here goes.. I am angry. Mad as hell actually that I have not allowed myself to be afraid, to be angry, to feel proud of the decisions that I have made to survive a disease that so many have not. Mad as hell that I have been made to feel ashamed of my experience and that talking about the importance of those self exams may actually save someone else’s life. I have decided that the reason others are uncomfortable with my story is that it keeps them from making excuses. You cannot stick your head in the ground and not take responsibility for your own body.
I hear all the time how strong I am to have gone through what I have. Well, news flash I am not that strong. I have had those moments where fear has overcome me and I have cried when no one was looking. I have cried for all that this disease has taken from me. I have curled up in my bed and covered my head when the pain has been so bad that all I have wanted to do was to give up. I have wanted to hurl everything I could lay my hands on against a wall just to hear it crash to the floor in a million pieces. I feel my body has betrayed me. I get so angry when I am told to move on and let go of the past when the past wont let go of me. I get so angry at people who are unhappy with their lives because they don’t have the job they want, the house they want or the money they want. All I want is to get out of bed one day and not have pain or stiffness. I want to feel whole again. But instead I have had to learn acceptance. I have accepted that this is my life and I make it what it is. My happiness depends on me. I have accepted that life is not perfect. But just because it is not perfect does not mean I give up. I get up everyday. I look for the positives in my life because if I were to dwell on the negatives I would have to question if all that I have been through and all that I still go through is worth it. There are days that it is hard to find those positives but then I remind myself I woke up today.