Lung Update: The Good, The Bad, and Even The Sad.

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It has been a little over a week since I was released from the hospital for the second time and I am once again perplexing my entire medical team…. or as my nurses point out, keeping all of my specialists on their toes. I will be honest, It has been a really hard few weeks as I recover from my chest tube procedure and extended stays in the hospital and both the emotional and physical pain that comes with that. I have been doing all that I can physically stand to do to distract myself from the fact that I have again been reminded that I am that .1% and as always I fall into the rare category with everything. As hard as it is for me, I have I to admit that I have had some of my lowest points since the very day I was diagnosed these past few weeks and, I actually took my positive and hopeful hat off and just felt, sad, frustrated, and even mad that I am still going through what I am going through 17 months after my diagnosis. I had prepared my mind and my body to face a year of sickness and pain in prepped both my mind and my body for the hardest battle of my life, however that was all with the expectation that after those very horrible and trying 12 months of treatment and surgeries, I would again regain my life or at least feel better, not worse.

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However, here we are a year and a half later and I am still being wheeled off to unplanned surgeries, and sitting in the infusion chairs far more then I would like to admit. As this point, my mind is sharp, my determination is strong, and I am ready to jump back into life, however my body is fighting me a bit on how soon this transition can and will happen. My team is again reminding me that my journey with breast cancer specifically is not the norm and I shouldn’t compare or beat myself because I have had to face many obstacles that do not arise in most or any other cases.. I have heard this from the beginning, and I have taken it in stride because to me, my journey is all I have ever known. With each curve ball I have been thrown, I have held my head high and forged through with an optimistic smile. I really never have looked up to the sky and asked why me which until this past week. I have faced every single sad, scary and frustrating day with true and real optimism and I have always believed that everything that has and is happening to me, was part of a greater and bigger plan for me in the long run a test of sorts that would take me where I was meant to be, but for whatever reason these past two surgeries and past 3 hospital stays have gotten me pretty down. I am not sure if it is because I am again trying to come to terms with the fact that it seems that no matter what, my path always comes with scares and complications or if it is just all catching up to me, but after a week and a half in the hospital, I had, just plain had enough. I wanted to go home. Ok, really I wanted to run out of the hospital and run away from everything that my life has become. I just wanted to disappear and pretend none of this was happening and although I know my medical team at Butterworth had a good reason to wanting to keep me admitted there was no stopping me. I just had to get out of that hospital and breathe, because in my mind I was literally going a little crazy.

For the first time, ever I got angry that I have been dealt a crummy hand and I felt sorry for myself. My husband was nervous to take me out of the hospital without full approval of the doctors, however I think he could see what was happening inside of me and he knew that I really just needed to break away. Within in seconds of being in the car, I started to cry. As we drove to get my prescriptions, I said, “I’m sorry. I know you didn’t want me to go, but I had to get out of there. I just cannot take it anymore.” I was struggling to keep up with all of the amazingly inspirational texts, cards, and posts, and I realized that I really just needed to “tap out” of the reality of my life and pretend that I wasn’t “Tammy the cancer patient.” Jordan could tell I was a mess, and I’m not sure he knew what to do. He reminded me that I needed to cut myself a break because it has been a crumby few weeks, as I watched quietly out the window, but it wasn’t helping. Everyone I saw seemed to represent something I no longer have in being out and about enjoying life. That alone seemed to fuel my frustration even more as they reminded me of how much I am still loosing in this battle. With the flip of a switch I was crying again.

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We Won!

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I am happy to announce that Josh Reed and the My Personal Pink Time video took home an Eclipse Award and the honor of being named “Best Documentary” last night at the Ellipse Awards Ceremony.

I caked on the healthy looking makeup and left equipped with both nausea and pain medication, but I was not going to miss an opportunity to celebrate Josh and this honor with my hubby, and Josh’s beautiful wife Erin.

I have to be honest, I had combed through every second and every detail of my video for months so it had kind of lost its emotional effect on me. However, in that moment, I for the first time unintentionally stepped outside myself long enough to actually see the impact that the collaboration of Sam’s emotional images, my words, and Josh’s amazing video skills were having having on others.

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Pain and Worry

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It has been a pretty rough few days physically, painfully and emotionally, and to be honest after feeling nauseous and struggling to eat or drink for the past few days post surgery, I am very weak, vomiting and constantly on the verge of passing out. It was a struggle because although I knew I needed to be seen, and I knew I really needed some fluids to get me back to a good place, I didn’t really know which, out of all of my specialists was best to call. Do I call my oncologist who has treated every condition for the past year, my cardiologist who knows of my cardio conditions but is unaware of how cancer exasperates them, do I call the surgeon who saw me last a few days ago in the hospital or do I call my general family practice doc?

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Ellen here we come: A Journey 5 Years in the Making

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Have you ever had a moment where it seems like the entire universe aligned around you and something that you really wanted to happen but never thought was possible…. actually happened? It doesn’t seem real yet, but this is happening to me. As most of you know my journey with breast cancer really started when my Aunt Pam was diagnosed and lost her battle when I was in high school. Not many people know this, but when she passed away, I made a promise to myself and to her that I would someday honor her by getting involved with the cause. I did a few awareness campaigns while I was in college, but I didn’t really feel like I was making a difference until 2011, when Vicki and I came together to create a campaign to nominate Vicki to be a guest on the Ellen DeGeneres show and fulfill her wish to share her breast cancer story with the world. Since Vicki had referred to her time with breast cancer as her “pink time” we decided to create a “pink time” facebook page to rally support for her wish. “Pink Time” first became the reference used when discussing her journey with Family and Friends. As well, being the reference to the singer “PINK” whose music provided courage and strength while the chemo drugs were being pumped into her body. Our efforts weren’t enough to get Vicki on the show that October, but a very beautiful friendship was born between the two of us.

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Good laugh | 3 year olds say the funniest things

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One of my biggest concerns in the beginning was how all of this was going to affect my sweet girl being that she was only 2 and a half when I was diagnosed. We decided that we didn’t want to hide what was happening to me, but rather do our best to explain things in a way that a toddler could break down and understand. In the beginning it was important to show her the bandages and the scars that she now calls mommy’s owies because she needed to know that she had to be-careful around me, which did back fire a few times in public because she would pull down my shirt and say I wanna see your owies mommy. 😀
Over the past year, she has started to understand it more and more and she always manages to make us smile in asking questions and voicing her opinion about all of this. I have been writing our conversations down since the beginning, even when what she says is sad. I just want to it documented. (Lord knows chemo-brain makes it hard to remember otherwise) but I have to share this conversation from today.

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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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Confusion & Emotion

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So it seems that confusion and emotion come even with the best of news when you’re dealing with the awful “c-word”. Although yesterdays test results are lifting me up, the fact that I have been feeling really weak and dizzy the past few days is reminding me that this is still my reality and in a way, always will be. I keep telling myself and others that I am fine but those closest to me are saying that I seem a bit withdrawn or even distant these days so maybe I am not as fine as I think I am.

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Embracing My “Pinkness”

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A few months back I was asked to be a part of a Making Strides Against Breast Cancer video that highlighted what the word “pink” meant to those of us who have been faced with Breast Cancer here in West Michigan. At the time the word pink did symbolize a great deal for me because I was going through the hardest of my treatments, however I don’t think I really understood how impactful the color itself was until this past weekend as I walked in my first ever Making Strides Against Breast Cancer walk. The entire day was amazing. I was surrounded by my family, friends, and a community of supporters who have walked this path before. As we started the walk, a sea of pink lined the streets of Grand Rapids and I realized that seeing a pink ribbon no longer triggered the fear of my reality. In fact the color itself has almost taken on a whole new emotion and lifted me up. It surrounds me like a giant hug and forever changes the way I feel when I see the color pink. It now serves as a reminder that I am not alone in this fight, and most importantly it reminds me that I can win this fight.

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