taking my life back

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What does the phase “taking my life back” really mean to someone who has or is facing Cancer

This is actually a post that I wrote most of, this past summer and couldn’t bring myself to post until I found it again overtaking my thought process.

So here’s some truth. The phrase “I cannot wait to take my life back, doesn’t mean exactly what you think it does, or there is at least a whole lot more to it then you think. As a breast cancer patient, we don’t really have to tell you about the obvious things that we are longing to put behind us, like wanting to have hair again, wanting to spend less time at the hospital or at doctors visits, being able to raise our arms above our head again, being able to plan for things without taking future surgeries and hospital stays into account, having two breasts, being able to buy an age-appropriate bra outside of a mastectomy fitting room at the cancer center, and most of all being able to play with your child without feeling winded, overcome with exhaustion, pain, shortness of breath, or fatigue. The truth is some of this will get better in time, and some of it won’t, but when I say that I cannot wait to take my life back, I mean so much more then all this.

The honest and real truth is that the hardest parts to “take back” so to speak, are most often the parts that we choose not to tell anyone about. Like the fact that you completely lose the ability to relate to “normal people” including your family and your closest friends, that you really no longer know how to have fun because you find it really hard to separate yourself from the new fear-based cancer version of yourself, and most importantly that you feel extremely isolated and alone at times even when you have the biggest support system and you are surrounded by family and friends that love you, because it’s not possible for others to understand where you are at mentally and emotionally unless they have been there themselves.

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Moving past the fear of getting “too close”

Moving past the fear of getting “too close”, and learning to be “at peace” with saying goodbye. When you’re diagnosed with something as scary as cancer a external transformation obviously happens as you progress through treatments and surgeries, however what those who haven’t experienced it personally may not realize is that an internal transformation also happens as well. In a sense you almost become a super human version of yourself. Every sense, every feeling, every fear, and every perception is heightened to the max and you are all of a sudden aware of everything around you to an extreme you have never experienced… the good and the bad. I have come to accept this transformation as a gift. Unlike most, I now see the beauty in even the dreariest days, I appreciate the littlest moments, and I take the time to be grateful for each and every day I have here, however there was a point about half way through my treatment where this transformation put me in a very fragile emotional state and almost made me withdraw from everything that I am and everyone that I cared about. I even withdrew from “My Personal Pink Time” for a while. I never thought I would actually explain why, however the conformation of some news that I have been dreading, has left me with a need to share.

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Saying Goodbye to 2015

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I have been looking forward to December 31st for so long because I couldn’t wait to put the hardest year of my life behind me. I woke up to one of facebook’s shared memories of photos from past New years Eves. Before I knew it, I was overcome with emotion and found it impossible to hold back the tears. Looking back at photos of our annual low key New Years Eve party with our best friends the Keasts and our girls, I realized just how clueless I was about what was about to smack me…. really all of us in the face. My mind was instantly flooded with memories of receiving the terrifying news, cold exam rooms, painful procedures, the wedge it put in our marriage for the first few months, the surgeries, infections, passing out at every turn, hospital stays, daily IV infusions, being sicker then I have ever been before, losing my hair, brows, and lashes, constantly seeing fear and sadness in the eyes of my closest friends and family, loosing parts of my body that I used to hold sacred and most of all, coming to terms with the constant fear that cancer was going to leave my baby girl without a mommy and my husband without a wife. But then something pretty special happened. I started receiving texts from my closest friends and family, and from people that have come into my life this year that I never would have met if it hadn’t been for my cancer diagnosis. Everyone was of course joining me in saying goodbye to 2015 and wishing me joy and good health in 2016, but to my surprise they were also thanking me for what knowing me during this journey has brought to their lives.
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Being pushed out of your comfort zone

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My Occupational therapist asked me to join her this past Wednesday as she gave a guest lecture to Grand Valley State University’s Graduating OT students on both Lymphedema and Auxiliary Web Syndrome. I really thought that I was just going to be laying on a table pretending that it didn’t hurt as she demonstrated how to treat the cording that runs down my arm and across my chest. What she didn’t tell me was that she was also going to have me share the details of my Breast Cancer journey with the class.

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Mommy’s Ouchies

When you’re faced with something as life-altering as breast cancer everyone you see seems to look at you with fear filled cancer eyes but the last thing I wanted to do was let my 2 see or feel that fear. At two years old your life is supposed to be filled with fun filled play dates but those days stopped on February 16th when I received my diagnosis. Our lives have been turned upside down, but so has our sweet girls. Instead of spending her days learning letters and playing with mommy she is now watching everyone care for her mommy.

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Pathology Results and Staging

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Today was in a sense “D” day with my amazing Surgical Oncologist Dr. Marianne Melnik who performed my bilateral mastectomy just over 3 weeks ago (My first surgery). Before walking into the exam room I was greeted by hugs from both Dr. Melnik and her amazingly sweet and helpful nurse practitioner, Kim. With a camera in tow I began to explain that I had a photographer documenting my journey in photos and that I really wanted something bigger and more positive to come from all of the negative that seemed to be surrounding me. Although Sam was not able to be with us today, Jordan acted as a stand-in to capture the raw moments. Watching both of their faces light up as I talked of my plans filled my heart with warmth and joy and oddly distracted me from our meeting intentions.

I’ll be honest, over the past few weeks I have been preparing myself to hear that I would only require 5 years of hormone therapy and at the most 5 weeks of radiation treatment, however the Onco-type testing results from tissues taken at the time of surgery came back with higher levels then expected which means that my treatment course now requires Chemo, radiation, and hormone therapy. As Dr. Melnik gave me the news my heart sank and my body and mind instantly went numb. In a weird way having cancer without the need for Chemo almost felt like not exactly having cancer, or at least having a lesser form. Now that Chemo is in my future this cancer and this diagnosis seems so much more real and in a way it feels like I am now having to tell everyone the bad news for the very first time all over again.

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I will admit hearing the words Chemo hit me like a ton of bricks, yet I still haven’t broken down and cried. I’m not sure why that is really but I think keeping my game face on gives me the strength I need to get through this. I know going forward that the loss of my hair will be my hardest day. Right now I have the ability to put on a strong face and hide behind my healthy looking exterior however I am facing the reality that Chemo will without a doubt strip my healthy exterior and bring me down to my most vulnerable of forms. Not being able to hide what is happening to me is my greatest fear, but I’m doing all that I can to embrace the good in all this and stay as positive as possible. Even though each day seems to bring a little more negative news my way, I am also reminded of all of the wonderful people and more importantly I am reminded of the amazing doctors I have fighting in my corner. I’m so happy to have the medical team that I have surrounding me right now and just as grateful for all of the wonderful people that have come into or even come back into my life since this journey started.

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In talking with Dr. Melnik and a Chemo specialist I was comforted in the fact that cancer treatment in general has come a long way in recent years. There is no doubt that this year is not going to be a fun one for me, however I am being told that the side effects have greatly lessened, and I will not only be able to function, but that I will also be able to work throughout my entire treatment course which was huge for me.

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I’m not sure how, but even in the moments the news was delivered Jordan was able to spring into action and capture the rawness of today’s meeting in Sam’s place. Perhaps it was the perfect distraction for him or and he saw how special it was that I was at least among the kindest of medical professionals when given the news or maybe he himself found it comforting to hide behind the camera. Either way I am so thankful he got the shots he did

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Going forward I will admit I have fears but I am also VERY confident that my specialist’s extensive knowledge paired with the care I see in their eyes and the hope i feel in their hearts is going to give me my life back. I am sure that Spectrum Health has a ton of exceptional Oncology Physicians on staff but I can openly say that I hold Dr. Marianne Melnik, at the very top of my list.

#mypersonalpinktime

Surgery #1: Bilateral Mastectomy

Before I knew it March 2nd was here and I was scheduled to report to Spectrum Butterworth campus at 8:45 to prepare for my 12:00 surgery. I had my friend Sarah, my photographer Sam, and my family with me. We made small talk and joked around while I went through all of my pre-op tests and procedures. I wasn’t nervous for the surgery, I knew I was in good hands, but I could see the worry on my family’s faces and they were all a bit tearful as I was wheeled to the OR. The anesthesiologist assured me I wouldn’t remember anything past this point, but I have very vivid memories of being wheeled into the operating room.

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My Personal “Pink Time”

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As many of you know I started the first “Pink Time” Page over 4 years ago with my dear friend Vicki as an outlet to not only share her personal breast cancer journey, but also to inspire others facing their own. Vicki came into my life like a whirlwind and captured my heart instantly. I cannot express how much she has inspired me over the past few years. Her deep sense of self, her ability to find a positive within every negative and her natural love of life always leaves me feeling good about who I am and what I have. I think it is this life perspective that gave her strength when she needed it most and I am very happy to announce that this past October marked 5 years since the start of her journey. She is living life to the fullest and enjoying the tropical weather during these cold winter months. She is still inspiring me despite the miles between us. One of the most amazing yet scary aspects of all this is that she has always made reference to the fact that our “journey” was not over and that there was something much bigger that tied our hearts together early on.

Her intuitions were correct, something bigger then both of us was happening from the moment we first met. This past week, I myself was diagnosed with breast cancer. I am 33 years old, I have no family history, and no common environmental risk factors, so to say this caught us off guard is an understatement. (This photo of my dear friend Vicki and I is from 4 years ago. The copy in the upper right hand corner was placed at the time this shot was taken and now serves as an eerie reminder that even then we knew that our journey had just begun and that there was something much bigger that tied our hearts together early on)

For those who are wondering I did find the lump myself and called my OB/GYN within a few weeks. Unfortunately my original appointment was rescheduled because my doctor was called into and emergency C-section so I was set up to see another OB/GYN in her place. In the time leading up to my appointment my mind went through every possible scenario. I will admit that in the beginning I did start to prepare for the worst. I had done the research and I knew that what I found was a little concerning in form, yet I still managed to convince myself that I was worrying for no reason. I will admit I was a bit nervous to see a new doctor for an appointment of this nature but she made me feel right at home because before she even shut the office door behind her she was already digging into my concerning medical history from years past that had never been addressed with me. She was calm, patient and informative from the get go and did tell me I should have it looked at further. I didn’t feel she seemed extremely concerned, however I could tell she wasn’t willing to take any risks, which put my mind at ease. She suggested I have an ultrasound and mentioned that she planned to get in touch with a radiologist to talk about my findings to get a feel on further testing. I got a call from her that night and email from her the following morning. She said that she talked to a radiologist and they felt I needed to have an ultrasound, a mammogram and potentially a biopsy right away to rule out a potential cancer risk. At this point I was a little worried but oddly still hopeful that they were just being cautious.

This brings us to last Tuesday. I met my amazing friend Sarah at the Lemon Holten Cancer Pavilion (saying that name still makes my stomach sink a bit). Jordan had to take care of Corryn so she wanted to be there for moral support and to also bring comic relief. Looking back on it now I should have realized that I had bad news coming because every single technician and nurse that treated me got a bit teary eyed while in my presence. It all happened so fast yet seemed like an eternity at the same time. I started with an initial exam with a very nice nurse and then I was sent to a separate waiting room away from the room Sarah was waiting in. As I looked around I saw women over 40 waiting for their yearly mammogram and I saw women with fear on their faces. None of it seemed real. It was very much like a dream or outer body experience. I had been siting there a few minutes waiting for my ultrasound when a young female technician came to get me for a mammogram instead. From the moment she made eye contact with me she looked as if she was on the verge of crying. I told myself she was fighting with her boyfriend and continued to stay positive through the imaging. As I was walked back the waiting room I realized that there were also women in this room that were not patients so I texted Sarah to have her join me. As we talked about how this was just a big scare, cracked jokes, and made small talk, I was asked to head back for additional mammogram scans. Almost immediately after I returned back to the waiting room I was greeted by an ultrasound tech. She was very upbeat and cheery unlike my first technician but I still sensed something in her eyes. She casually talked to me about my day as she started the to run the wand over my breast, however the conversation started to slow. As I stared at the eerie photographic ceiling tiles above the table I was lying on, I started to realize she was seeing something concerning. Just then she told me she needed to talk to the radiologist and that she would be right back. I sensed panic in her voice as she tried desperately to make this seem like a routine part of the process.

While she was gone, I managed to distract myself but deep down I was realizing what was happening. Oddly I didn’t panic or even think the worst as I was doing the previous week, instead a very strange calmness came over my body. All of my worries and concerns had dissipated and I now had my game-face on. It was almost as if I had got all the scary thoughts out of my system and I was ready for what I knew was about to smack me in the face.

That was when my technician came back into the room. She told me that the radiologist wanted to see me in his office because he preferred his computer screens. She then asked if I had anyone there with me that could join me in his office. I remember this moment so vividly. I calmly and bluntly asked her if I needed to have someone with me? Instantly her eyes welled up with tears and as she struggled to say “yes the doctor thinks this is serious”, I cut her off. I told her that I had a friend in the waiting room and her name was Sarah. Everything after this moment is a blur. I know I was lead into the office of a radiologist and he struggled to say what I knew he had to say. He danced around it a bit talking about different things he found on my scans while giving me what seemed like no information at all. And then the words came out of his mouth. He said, I think this is serious. I think you have two forms of breast cancer. I don’t remember much else about my very short conversation with him, however I know that as I heard the words “breast cancer” I felt the comforting arms of both Sarah and my nurse on my back.

It wasn’t long after that, that I found myself in a different room with my original nurse and Sarah by my side. I remember saying “is there any way that he can be wrong?” and hearing the response; “We’re pretty sure he isn’t wrong, but medical miracles do happen”. I think this was the point where I mentally checked out and my mind went numb. I didn’t cry in fact I still haven’t. I just sat there calmly as the words seemed to be spinning around me. It felt a bit odd that this appointment had taken such a quick turn for the worst and I hadn’t let Jordan be there with me, but I have sense realized that Sarah was the “perfect” person to be sitting by my side. My husband is amazing, but even he will admit that staying calm is not one of his strongest features. Sarah was noticeably emotional, but she was comforting, she was calm and she quickly went into help-mode as she started writing down every detail that came out of nurse’s mouth. She wrote down everything from the scary details to the surgeon’s and doctors that the nurse was confidently and secretly recommending under her breath. “I remember her saying we are not supposed do this, but you are young, you are beautiful and you are the same age as my daughter… You deserve the best.” Her words were like a giant hug. We kept talking for what seemed like hours until there really wasn’t much left to say. Just blank stares and comforting hugs. At this point I believe we had been in the office for a good 3-4+ hours and they were no longer able to preform my biopsy. Instead I was to report back the next day. However I had already been told that they were pretty certain this was cancer so I now had to not only tell my husband, but also my parents.

My parents traveled to Grand Rapids the following morning and joined Jordan and I at the hospital for my biopsies. I was to have 2 areas biopsied and I was told that they may try to sample a lymph node as well. It was like starting the previous day all over again. I still had my game-face on so I was doing ok, but everyone seemed as calm. This is when I met my new nurse. She again had caring tearful eyes as she talked to me about my procedure but her presence alone was oddly comforting. She started to tell me about the doctor that was going to be preforming my biopsies. She mentioned that he was very good but he was a man of few words. She said that his silence may be uncomfortable but that she would be there with me. It was like she was inside my head because she quickly walked away and came back with news that I would now have a different radiologist performing the biopsy. I was assured that this doctor was not only amazing at what she did, but that she would also be there to talk me through the entire process. I will say that although it was painful, spending about an hour in a room with 3 other women was actually a very good distraction from what was happening. We talked odd or embarrassing medical appointments, our children, and the fact that my radiologist and I not only shared the same first name, but we also went on the same honeymoon. To be honest the room was full of laughter until I asked her if she could tell me what she was seeing. Although it took nearly 48 hours to confirm cancer, we left knowing the truth.

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I have come to believe that there is nothing I could have done to prevent this and that everything up to this point in my life has prepared me for this very moment. You see, my journey with breast cancer started at the age of 13 when a very special aunt of mine was diagnosed herself. Although her journey was cut short due to a late diagnosis, it was still very powerful to everyone who knew her and it has forever changed me as a person. Her passing left a hole in my heart that I will never be able to fill, however I also feel that witnessing her strength gave me strength and determination very early in my own life. I know in my heart that this is why I connected with Vicki so deeply and knowing both of them has helped shape a big part of who I see when I look in the mirror today.

This past week has been full of every emotion possible, yet it has also been strangely calm at the same time. I have made a promise to Jordan, Corryn and most importantly to myself that I will face this with strength, confidence and determination and with the help of Vicki I am also promising to take time to focus on what I need right now. I know that my Aunt Pam and my dear friend John who passed away 2 years ago from Mesothelioma, are guiding me through. I know that I am not alone, and I am open to where ever this journey takes me.

In the words of Vicki, I am embracing my “Pinkness”. From the moment I heard the words “I think this is breast cancer”, a certain calmness came over my entire body and I felt completely surrounded by hope. Not only from my closest friends here in West Michigan (you know who you are) and my family, but also from everyone who has treated me at Lemon Holton Cancer Pavilion in the past week. My doctors and nurses have been truly amazing and have went WAY above and beyond to help guide me through this very difficult process. It’s hard to complain when the radiologist who performs your biopsy not only contacts you while on a family vacation in Colorado but also asks to meet you for coffee before your surgery and your nurse becomes more like a long-lost childhood friend who checks in almost daily. I cannot tell you how many personal numbers I have been given by medical professionals and how far these individuals have gone to help put me at ease. I believe even they were meant to be a part of this journey.

Since diagnosis last week the process has moved extremely fast. I have undergone genetic testing and I have met with a surgical oncologist, a medical oncologist, and a fertility specialist, a plastic surgeon and an entire oncology team as a second opinion. I am scheduled to undergo a bilateral mastectomy this coming Monday March 2nd. At this point I am being told a lot of positive things about my “cancer” but we will know a lot more after the surgery. I am strong and I am ready to face this head on.

As this word gets out it is getting harder and harder to keep up on voicemails,
texts, and emails so please check this page if you would like an update.

#mypersonalpinktime

 

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