False Expectations and Survivorship

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One year ago today I finished my radiation treatments.
For 9 months I had been counting down to this very day, the day that I would walk out of Lemmon Holton Cancer Pavilion knowing my hardest treatments were complete and my cancer was behind me. I thought this day was going bring a since of accomplishment, joy and relief, but boy did I have another thing coming.

One year ago today may have marked the end of my intense chemo and radiation treatments, however it also marked the first day of my survivorship or what I like to call my “now what” phase. Which just happens to be longest and by far the hardest phase of my cancer journey. I walked out those doors feeling anxious, fearful, and worried and all of a sudden the weight of the world was on was again on my shoulders, but now in ways that I had never felt before. For 9 months I knew exactly what I had to do to fight my cancer. I saw my oncologist every 3 weeks, my Chemo Nurse, and my Oncology Nurse practitioner regularly, and I saw my infusion nurse nearly everyday. I was being monitored very closely and if anything came up, it was addressed on the spot. As my Oncologist hugged me and said I’ll see you in 3 months, I put on my best smile, but it was hard to fight back the tears that were filling my eyes. There were no tests, no scans, nothing to confirm that the treatments had worked, nothing to assure me that the positive cancer margin that I had left after my bilateral mastectomy were now gone, and nothing to comfort this fear. We were just trusting the science behind chemo and radiation therapy alone and hoping for the best. At this point both my oncologist and my oncology nurse told me that I needed to pay very very close attention to my body and call them right away if anything new was happening because they would get me in, in a moments notice. They said I needed to become the hypochondriac that they were trying so hard to help me become over the course of my treatments, but now I couldn’t help but feel it was all on me. What if I missed something? What if I misinterpreted a sign or most importantly what if there were no signs at all? My mind was racing with fears and concerns. Did my treatments work, did the fact that they deceased my recommended chemo regimen by 25% (because my body couldn’t handle it) decrease the effectiveness of my treatments, what if going through IVF and putting a very high dose of hormones back into my body was a bad idea, was I ever going to feel like me again? As my mind filled with fear and doubt, my anxiety was going through the roof and an internal battle began in my mind. After all I was supposed to be happy, I was supposed to feel better, I was supposed to be putting the bad, the hard, and the scary behind me and I was above all, I was supposed to be getting my life back. In the beginning you are prepared for everything that is about to happen to you and you are told, it is going to be a hard year, but you assume things will get better when that “bad year” comes to a close and the worst of it is over. Unfortunately despite what those on the outside think, this is not what happens as a cancer patient finishes treatments.

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Initially it seems like a lot of physical work, or it did for me. My body was and is just plain beaten down after chemo/radiation treatments and surgeries. I didn’t have the energy to do anything and even walking across the room made me faint, weak, and winded. I struggled and still struggle to lift my left arm above my head because of auxiliary web cording from my mastectomy surgery, and to top it off I was now starting a 10-15 year hormone therapy regime that would cause severe and debilitating bone and joint pain, as well as osteopenia, which is the early on-set of Osteoporosis; when your bones begin to deteriorate because your body is being stripped of all hormones. I was now facing another year of surgeries including several reconstructive surgeries and the surgery that would forever take my ability to bare the second child I was planning for  before my life was turned upside down. The after effects of being medically forced into menopause were also starting to become more then I expected them to be. The headaches, the night sweats, the hot flashes, the pain, and the biggest challenge of losing all closeness and intimacy with my husband at the age of 33 bothered me more and more every day. That’s when it hit me. Nothing about me was the same and it never would be again, despite what everyone around me thought. When I stood in front of the Mirror I did not see Tammy, or even any glimmer of the Tammy I had always been. Rather, I saw someone who had been broken, someone frail, defeated, and most of all someone full of pain, sadness, and fear. It wasn’t just what happened externally in loosing all of the body parts that made me feel like a women and filling my once young looking body with scars because that part I had excepted, or even the weight gain or loss of elasticity in my skin due to the medically induced menopause that were the biggest changes; the biggest changes happened within me and that is something you can only see by looking beyond my smile. I could no longer relate to normal daily conversations with family and friends because cancer became my everything. I could no longer think about the future with delight and anticipation because instead I wondered if I would even be here to see the milestones that my daughter would achieve. I really had lost the ability have fun, the ability to just be “me”, or even the ability to just live life. But the hardest part still to this day, is knowing that the awful “c” word would always be lurking in my world. That no matter what do, no matter how I eat, and no matter how I live, my cancer could always come back and take me from my family.

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If dealing with all of this isn’t enough, I had to add on the hardest aspect of all. I now had to figure out how to navigate through all of this and still put on a smile on my face because to the outside world I was expected to feel better, to be happy, and to be me again. I was supposed to be picking up the pieces of my former life and moving forward with a me that I didn’t know yet. Everywhere I went, I heard “oh my gosh you look so great”. “You must be feeling so much better now that your treatments are done”. Every time I heard this, I couldn’t help but be reminded of how wrong that statement was, I couldn’t help but think of how much cancer has taken from me, and how much it is still impacting my life and my mind.

Over the past year I have began to work through all of this, but it has not been an easy process and I cannot say that this process or this work will ever be complete as it too seems to be a very long journey in itself. I would say that my relationships have changed in both good ways and not so good ways. I do feel that in some ways cancer has brought me closer to some and even strengthened some bonds, however I am realizing that I am somewhat withdrawn from even those who used to be closest to me, because what I am going through mentally and emotionally post cancer is something that someone who hasn’t been through cancer themselves could never understand, which creates a certain level of isolation in itself. Every pain, cough, or change in my blood work triggers a fear that my cancer is back and every time I look back on photos from the past year and a half I am reminded of the time that I was not able to be the mommy I wanted to be for Corryn. I do my best to then remind myself that I was doing what I had to do, to ensure I will be here to see her grow into a beautiful women, but the truth is my cancer could still come back. I received a comment that drives home what we young cancer patients already know to be true. When you are diagnosed with breast cancer under the age of 40, your cancer is different then if you are diagnosed over the age of 55. It is stronger, more aggressive, faster growing, and it is far more likely to return and metastasize in our bodies. A women commented on my page by saying that she was in a group of young cancer patients 12 years ago and not one of those young women are alive today. This thought haunts me and sadly it always will.

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But on the positive side, I have also learned more about myself over the past year, then I have over my entire lifetime and I truly do believe that I didn’t become the person I was meant to be, until cancer brought me to my knees. With all of the sadness, fear, and anxiety I am learning to accept and even embrace the new me and most of the time, I even  like the new me better. I have always been a very optimistic and positive minded person and I have tried to approach my new life with cancer in the same way. With each day, I make a little more progress, and I am learning that even on the days that take me a few steps backwards, there is always something that can be learned from those steps. For me, it took letting go of what I cannot control and accepting that my cancer could return and take me from my family, before I could actually put that fear aside long enough to live in the moment again and actually smile from my soul. There are still days that this fear does consume me, but on those days I try to listen to my dear friend Vicki and have compassion for myself, and most of all, I try to allow myself to feel what I am feeling for as long as I need, and then I dust myself off and put my game face back on. Looking back I am still not sure I would take any of my cancer journey back, because of all of the life lessons and self-growth it has brought my way, however, if I could make those who don’t love or appreciate their own lives, see just how lucky they are or even just take away some of the fears that lurk in my own mind I would jump at the chance. With that being said, if I could offer any bit of advice to someone in my shoes; it would be to keep your heart and your mind open through your entire journey. Don’t fixate on getting the life you had back, but rather open yourself up to seeing the life you were meant to lead. Don’t worry about the day you will be taken, but rather try to live in the moment today. And above all if your new life with cancer has you feeling sad, fearful, or anxious in ways that others around you could never understand, give yourself that day to feel it. You… We have earned those days, and we need those days in order to get back to the good days. If I could offer any words of advice to a spouse or caretaker or even a friend on the outside, I would tell you to remember that just because we cancer warriors are starting to look healthy on the outside with budding hair and eyebrows it doesn’t mean that we are even a little bit ok on the inside or even that we are “better” at all. Cancer is not something you get through and move on from. It is something that we did not choose but happened anyway, and worst of all it is something that will linger over us causing fear of the unknown, long-term pain, and even some level of sadness and loss for the rest of our lives.

#mypersonalpinktime #oneyearpastradiationmilestone #cancersucks

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