There is so much to say about Stirrup Stories I cannot fit it all in one post. It was such a spectacular event! If you aren't sure what Stirrup Stories is, please take the time to check out my blog post pre-event. I headed off to DC last Thursday with my script in hand preparing for the evening. An evening that was organized as a benefit to celebrate ten years of cervical cancer advocacy by Cervivor. It was AMAZING! There will be more posts coming about the event, such as pictures, a video of the event, and lets not forget the fact that I got to meet the family members of Henrietta Lacks! I wanted to take the time to share with you the script I used to rehearse for the event. I will admit that when I walked on stage I sat the script down and therefore went a tad off script but it was so amazing. When I talked about defeating cancer by the way I live my life you should have heard the cheers! Tamika, Cervivor Chief Visionary, is still getting calls mentioning parts of the stories shared. It is so powerful to hear that our stories are making a difference.
Time. How much time do I have? I have cancer now, today, and there is no end in sight. If you look at me, I don’t look sick. I don’t look like what a cancer patient is “supposed” to look like. In fact, I look 1,000 times healthier than when I was going through aggressive treatment. But, do you know what? This is a face of cancer. This is what cancer can look like.
I was first diagnosed with cervical cancer in 2012, I had a trachelectomy. It came back. I had chemo and radiation. It came back. Where I stand today, I have cancer. It isn’t going away. It’s cancer, that I live with.
The third time I was diagnosed with cancer, we opted for a surgery to remove it. After the recovery, I was gearing up for more radiation and had a PET scan. That scan would change the course of my life and treatment. That scan, similar to others before it, revealed that there was more cancer. However, this scan was different. I found out the cancer was in seven areas, including my pelvis and now, due to previous treatment, it couldn’t be treated with radiation. This PET scan was a deciding moment in time. We could move forward and attack cancer aggressively, a cancer that isn’t making me feel sick, a cancer that is just inside of me. This aggressive treatment would make me more sick then the cancer. Or we could switch courses. We could transition into a treatment to maintain the cancer at the size it is and stop it from spreading. A treatment which typically works for a while but sometimes does not. This would allow me to live my life more on my terms: I can teach, coach, parent, advocate, and live my life with my family and friends. It gives me a better quality of time, but not necessarily more time. This is a plan that means coping with the fact that I am not trying to cure my cancer. It means living with cancer.
I have been asked, what is your timeline? I wasn’t given a timeline. I never asked for a timeline. Any time that I ask my doctor what happens next he assures me that we have additional treatment options if the cancer gets worse. This is not the end. This is just a phase; a phase in time. I know women who have been on this treatment for years, maintaining cancer and I know women who couldn’t make it through a full round of treatment. It means I live my life in three to six month chunks, the months between scans. During this time, I have to mentally think that the treatment is working. Each scan brings new information. Each scan brings the possibility that I will get thrown back into aggressive treatment. Each scan brings the possibility that the cancer has progressed.
I am a planner; this has been the hardest part of living life with cancer. I like to know what I am doing three weeks from now on Tuesday at 5:00. I like to know that I can schedule a vacation, girl’s night out, bowling with my son, or even just plan to be at work and that I will actually be able to follow through with those plans. On a day-to-day basis I don’t know what I am going to be able to do. I would like to be able to plan a night out with my husband, and know that I am going to have the desire and ability to have sex. Cancer took that away from me. I can’t plan the big things either. My husband wants to talk to me about buying a house, I can’t even imagine buying a house. My work wants to talk about a leadership position, I would love one but it is hard to even mentally sort out what I have time to do. What if next month I end up in the hospital? What if I am no longer able to work? What if I die?
Well, there it is. What if I run out of time? I am not really afraid for myself when I die, I am afraid for my family. I am married to a wonderful supportive man who has taken on full responsibilities for being a father to our son. However, if I die he has no legal rights to our son. I have full custody of my son and his biological father is only allowed to see him during supervised visits. If my time runs out, he holds all the cards. My husband would lose not only me, but our son as well. My son would lose his mother, and the man who he sees as his father. I am terrified of what I will be leaving behind if the treatment stops working. I am terrified of running out of time.
Many people voiced their concerns about my treatment, those people don’t live in my shoes or see how the aggressive treatment tore apart my body. They weren’t here to see me sleeping 16+ hours a day, they didn’t see me in the hospital for a week, every three weeks. They didn’t see. Many people don’t understand how I can cope with not having a curative plan, with not having a timeline. To be honest, some days I agree with those people. Some days I question if I made the right decision. If I made the right choice to put quality of time ahead of quantity of time. On those days I try to remind myself of the following: look around, look at what you are doing. You are living your life and not holding back. Although it may be inside your body and not going away, you are most definitely defeating cancer by living your life!
I AM the face of cancer, but I AM not NOT out of time.
Time. How much time do I have? I have cancer now, today, and there is no end in sight. If you look at me, I don’t look sick. I don’t look like what a cancer patient is “supposed” to look like. In fact, I look 1,000 times healthier than when I was going through aggressive treatment. But, do you know what? This is a face of cancer. This is what cancer can look like.
I was first diagnosed with cervical cancer in 2012, I had a trachelectomy. It came back. I had chemo and radiation. It came back. Where I stand today, I have cancer. It isn’t going away. It’s cancer, that I live with.
The third time I was diagnosed with cancer, we opted for a surgery to remove it. After the recovery, I was gearing up for more radiation and had a PET scan. That scan would change the course of my life and treatment. That scan, similar to others before it, revealed that there was more cancer. However, this scan was different. I found out the cancer was in seven areas, including my pelvis and now, due to previous treatment, it couldn’t be treated with radiation. This PET scan was a deciding moment in time. We could move forward and attack cancer aggressively, a cancer that isn’t making me feel sick, a cancer that is just inside of me. This aggressive treatment would make me more sick then the cancer. Or we could switch courses. We could transition into a treatment to maintain the cancer at the size it is and stop it from spreading. A treatment which typically works for a while but sometimes does not. This would allow me to live my life more on my terms: I can teach, coach, parent, advocate, and live my life with my family and friends. It gives me a better quality of time, but not necessarily more time. This is a plan that means coping with the fact that I am not trying to cure my cancer. It means living with cancer.
I have been asked, what is your timeline? I wasn’t given a timeline. I never asked for a timeline. Any time that I ask my doctor what happens next he assures me that we have additional treatment options if the cancer gets worse. This is not the end. This is just a phase; a phase in time. I know women who have been on this treatment for years, maintaining cancer and I know women who couldn’t make it through a full round of treatment. It means I live my life in three to six month chunks, the months between scans. During this time, I have to mentally think that the treatment is working. Each scan brings new information. Each scan brings the possibility that I will get thrown back into aggressive treatment. Each scan brings the possibility that the cancer has progressed.
I am a planner; this has been the hardest part of living life with cancer. I like to know what I am doing three weeks from now on Tuesday at 5:00. I like to know that I can schedule a vacation, girl’s night out, bowling with my son, or even just plan to be at work and that I will actually be able to follow through with those plans. On a day-to-day basis I don’t know what I am going to be able to do. I would like to be able to plan a night out with my husband, and know that I am going to have the desire and ability to have sex. Cancer took that away from me. I can’t plan the big things either. My husband wants to talk to me about buying a house, I can’t even imagine buying a house. My work wants to talk about a leadership position, I would love one but it is hard to even mentally sort out what I have time to do. What if next month I end up in the hospital? What if I am no longer able to work? What if I die?
Well, there it is. What if I run out of time? I am not really afraid for myself when I die, I am afraid for my family. I am married to a wonderful supportive man who has taken on full responsibilities for being a father to our son. However, if I die he has no legal rights to our son. I have full custody of my son and his biological father is only allowed to see him during supervised visits. If my time runs out, he holds all the cards. My husband would lose not only me, but our son as well. My son would lose his mother, and the man who he sees as his father. I am terrified of what I will be leaving behind if the treatment stops working. I am terrified of running out of time.
Many people voiced their concerns about my treatment, those people don’t live in my shoes or see how the aggressive treatment tore apart my body. They weren’t here to see me sleeping 16+ hours a day, they didn’t see me in the hospital for a week, every three weeks. They didn’t see. Many people don’t understand how I can cope with not having a curative plan, with not having a timeline. To be honest, some days I agree with those people. Some days I question if I made the right decision. If I made the right choice to put quality of time ahead of quantity of time. On those days I try to remind myself of the following: look around, look at what you are doing. You are living your life and not holding back. Although it may be inside your body and not going away, you are most definitely defeating cancer by living your life!
I AM the face of cancer, but I AM not NOT out of time.
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