One of the most common questions I get as a person with cancer is, “How much longer until you are done?” It by all appearances is a simple question, but it is probably the hardest question I am asked on a regular basis. There are two answers to that question, and while I find myself almost always spouting out the timeline for my current treatment I walk away feeling as if only half of the story has been told. I walk away feeling less than honest with myself and I walk away feeling stressed by the need to keep things so black and white in a world that is no longer direct timelines and quick answers. I walk away feeling like I have given the easiest of answers simply because I do not want to sound negative, but who am I protecting? It’s not me, because the true answer is one I’m very much okay with, and it is not you, because I feel you genuinely want to know.
For those of you that really are asking me, “When are you done with your current treatment plan?” I will tell you. I have nine weeks of chemotherapy left. I have six weeks of radiation after that. I must get my ovaries removed shortly after. No, I have not decided about reconstruction, but I am not eligible to consider it until next year, so I still have time to decide if I will be traveling down that road or not…
But I do not believe that is what everyone is asking…at least not in the wording, “How much longer until you are done?” Or maybe they are asking a simple question, but they just do not realize it is not that simple for me. Either way, I’d like to give you all the real answer that plays itself out in my head as I walk away wondering why I gave you my stats when they have very little to do with your question. It is the real answer to that question that kept me from sharing my pathology report, because I was afraid people would not see the whole picture and feel like the answer to that question is, “Soon.” They would be wrong and I was not ready to explain.
The real answer is never. I will never be done. For some reason I do not tell you this, because it sounds kind of scary and daunting, but in all honesty it is really an okay place to be. It is a place I need to be. It took me a long time to accept this answer, and as soon as I did I was a much happier person for it.
Finding out you have stage 2 bordering on stage 3 cancer is scary, but it is also very doable. Almost immediately you are set up on a whirlwind of treatment plans and finding answers to your many questions. Before you know it your game is set and you know your path and you feel a real sense of being able to beat cancer. Obviously you have some nagging thoughts and concerns. This is only normal, but for the most part, or at least in my experience, determination washes over you. You can do this. You will win.
The hardest blow did not come until I found out my genetic testing came back positive. I found out that cancer is literally built into my DNA. My body actually lends itself to having cancer, and to a certain extent one must admit that treatments both traditional and alternative while amazing and promising cannot guarantee a winning battle against the very genetic make-up of your body. Yes, I still knew I could do this. Yes, I still knew I would win. But what I no longer could find peace in was that this would be a lasting victory. I struggled with the knowledge that I could go through so much to beat cancer just to have my DNA start this process over again.
I am in no way saying I am definitely going to have cancer again. But I am also being realistic when looking at the numbers. When I talk about long term success rates, do you know that those are measured by five years? You have successfully beaten cancer according to the studies if you did not have a relapse within five years. However if you get cancer again in six years your percentage does not factor into the studies. That is not a part of the success rate. Given that I am 28 years old, I have a lot more of life left in me to only hope to be cancer free for five years. The fact that I got cancer at such a young age actually means that I have a much longer window in which my DNA can start rapidly producing cells again.
I am also being realistic that there is a chance of recurrence, because there is actually a high chance of recurrence within the first year and then a slightly lower, but still high chance for recurrence in the three years after being diagnosed. It is just a part of having cancer. Cancer can be a stubborn little monster.
There are many reasons this terrified me. The first is the knowledge that with each relapse into cancer there are certain drugs you have already maxed out on. For this current battle against cancer I have gone the absolutely most aggressive route. But these are medicines your body can only handle so much of before they will kill you. Chemotherapy is poison and you can only take so much of each type before there is more damage than good. So this means if I have a relapse, I will not be eligible for what is currently the most aggressive treatment. My options become a little more limited. You can only take my type of medicine once. You can only have a double mastectomy once. You can only have your ovaries removed once. And if you will remember from an earlier post you can have these things removed and still run the risk of getting breast and ovarian cancer again. I fully believe that the medical community is always coming out with new and amazing medical treatments, but they are not such rapid developments that it means a person who relapses will have endless options. There is no endless pool of treatment discovered yet. With limited options and less aggressive treatments comes lower success rates, for as much as those are worth.
I was also scared, because I hated the idea of knowing that cancer would always be lurking over my shoulder. Every bump, every node, every suspicious feeling or spot I would be questioning, “Is it cancer?” I could not imagine a life of peace when every ailment sent me flying to the doctors and waiting for life altering news, because I cannot trust my DNA to take care of my body the way it should. I could not imagine a life of happiness if I was always worried that I would have to go through all of this again. Most of you know that I had three suspicious biopsies in the six months leading up to my diagnosis. Two of these were for completely different types of cancers that are not connected to breast cancer at all. Not many people know this, but I’ve already had to have a suspicious spot on my gums looked at while doing treatments for breast cancer. Luckily it came back as nothing, but the whole time I was freaking out, because if it had been cancer there is nothing they could do about it until I finished all of my current treatments, and none of my current treatments would even touch a different type of cancer. Not many people realize that there are different drugs for different types. The type I am on does wonders for breast cancer, but would not stand a chance against throat cancer for instance. If I’m already running into suspicious activity before I am even done dealing with this current cancer it made me feel very scared for the future. Living in fear of what could be was not my idea of living and I was worried there would be no other way.
It turns out there was another way. I was determined to try and ignore these fears, and I told myself that this was it. I had cancer. I was going to beat cancer. My life was going to go back to normal and everything would be fine. If someone asked me, “How much longer until you are done?” I gave my timeline and tried to convince myself I believed it…but at night I would still lie awake in bed and worry. When I was alone my thoughts would wander back to the what-ifs and the percentages and my age and my DNA and I would feel so scared. I knew I was afraid of being wrong and having to handle being told again one day that I have cancer. The war has not ended. I must rejoin. I must polish my battered war gear. I must call on my diminished resources and walk onto the battlefield with still pink battle scars, when all I wanted to do was go back to the way things were before. I wanted my normal life back.
One night of many nights Adam and I were discussing my fears when he said the words that I was most afraid of, and yet they inexplicably offered me more comfort than I had felt in a long time. He said, “I think it is safe to assume you will have cancer again. This is not a journey that will ever be over. There is no going back to normal. There is only finding a new normal.”
I sat dumbstruck waiting for this news to come crushing down on me. I waited to feel the fear I had been battling for so long to consume me, but it did not come. Instead of being terrified of the what-ifs I was relieved to just know. The answer to everyone’s question including my own was, “Never.” Simply never. Cancer is in fact a part of my life and my DNA and age suggests it will always be a risk in my life and a part of my thoughts.
I talked to my brother and he said the exact same thing to me. He knew the answer all along as well, and knew it was not something to be afraid of. He said, “It is knowledge that empowers you. Now you know. There is no worrying. There is no denying. It is your life and now you just decide what to do with that information.”
As soon as I accepted the facts that I already knew…well I know it sounds crazy, but I was okay with it, and this is what I want people to know when they ask me how much longer until I am done. I want to be able to say never without them thinking this is a bad thing. It is not. It is just a part of my life and not only am I happy to know it I have found strength in knowing it, because it has forced me to stop waiting on the life I had and start developing the life I will have.
Do not get me wrong. It would be foolish of me to say that I am no longer afraid of cancer. No one wants to have a relapse, but I feel more prepared for a relapse now that I am not denying its likelihood. It makes me more aware of the steps I need to take to be happy, content, prepared and ready when my body decides it is ready to fight this battle once again. It has made me delve further into all types of therapies that can be followed. It has made me think about alternative life choices. It has made me more aware of my body. It has made me realize that a second cancer is no more an end of my days as this first one is. And if there is a third or fourth? So be it. I will be ready. I will be more conscious of the things I need to look for to make sure I am always staying ahead of it. I am replacing denial with vigilance, and the one suits me much better than the other.
Accepting my genetic testing has brought more light to my previous strange and obscure health problems of the past. Adam said it perfectly when he told me, “The thing is that you get sick and when you get sick you really go the whole way. But you survive. You always survive.” And I am here to let you know that he is absolutely right.
So the next time you find yourself about to ask me how much longer I have until I am done I want you to know the answer to that is never. I will never be done, because my DNA says I am going to have cancer, but that is not a negative thing because it also means I am never done fighting it either. I am a survivor and a fighter. I always have been in every aspect of my life and it is a quality embedded so deeply in me that I can only venture surviving is set right there in my DNA too. The doctors may not have a way to test for that yet, but if they did they would not just see the CANCER written in my genes…no, they would see CANCER-FIGHTER. This may never be over, but I will fight and I will survive, and that is why I am no longer afraid.
