The Words I Never Wanted To Hear.

A causal dinner complete with small talk. She asked how my oncology appointment went,  expressed concern over the uncertainty of two area’s found on my last MRI, and worry that I would again face challenges in getting my insurance to cover my followup MRI, and then she said, “while we are on the topic, I have to tell you something that you’re not going to want to here”. I quickly said, What is it? What’s wrong and felt my heart sink deep into my stomach. She said, I don’t even know how to tell you this as she reached into her purse to grab a folded white sheet of paper. I could feel the monster creeping around the corner as the air got thicker.

The first thing I saw was the words Invasive Ductal Carcinoma. The three words that have literally been burned in my mind since February 15th, 2015. The three words that forever changed my life and turned my world upside down. I suddenly saw the past two and a half years playing out in my head slide by slide. Every moment flashing a little faster than the moment before. My palms got sweaty, as I could feel the stress-induced hot flash burning inside of me. All of a sudden the room went silent, and my world stopped just as it did the very first time I heard the words Invasive Ductal Carcinoma. Everything slowed down and my senses heightened. It was as if I could see what was playing out from a birds-eye view. A thousand questions spiraled into my mind, but for a second I could say nothing because it took every ounce of my being to hold back the tears this time around. I took a deep breath and pushed the emotion deep inside as I looked up at my mom and calmly said no… not you too?

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Sharing and Teaching Round 2

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When my Occupational Therapist asked me to let her do a live demonstration or therapy session on my cording during a presentation on Post Mastectomy Cording and Lymphedema that she was giving the GVSU graduating OT students this past December, I really didn’t know what to expect…  or should I say; I didn’t make time to over-think what was about to happen as I often do. Instead, I kept my promise to allow this journey with breast cancer, to take me where I was meant to go and I accepted the invitation to share some of the real struggles that come from breast cancer with young students who will indeed be in the position to help women like me in the future. Although I walked into the lecture hall not knowing what to expect, I was completely in the moment and did exactly what felt right. I shared not only a bit of my story, and the struggles I am still facing post mastectomy/reconstructive surgeries, but I also bared all and showed my real lasting breast cancer battle scars and a glimpse into some of the drastic physical effects of breast cancer and how that impacts or  limits aspects of your everyday life after breast cancer. I know I have said this many times before, but before my diagnosis I would have never shared these details with even my closest friends let alone a group of students I have never meant, but this year has opened me up in ways that I cannot explain. My own personal insecurities now fall second to my passion to make a difference and turn my crazy year into some type of positive. So far, following my my gut impulse and most importantly following my heart in the moment, has not let me down this year and this day was no different. Every student in the room had compassion, was engaged, and most of all every student was there in the moment with me. I was at ease, and I felt safe, but most of all, I felt like in that exact moment, I had the ability to give each and every student a real look at what a young woman with breast cancer really face, even the things that nobody really ever talks about, and I had the ability to help my amazing occupational therapist Amy teach these students first hand, so that one day when a woman dealing with all the physical struggles that come from breast cancer is sitting in their office, they will be able to better help them with a better understanding of their struggles. Although both my husband and I were both shocked at how much I actually shared, there was no regret. I walked out of that classroom feeling grateful that Amy asked me to be a part of her presentation, but also feeling like being there that day, was in a way fulfilling one of the purposes that has been laid before me.

_DSC3485 copy_1140That purpose got a little greater, a month or so back. A few occupational therapy students from SVSU in Saginaw, MI happened to see Grand Valley’s post about the presentation that Amy and I give on Facebook and they contacted me right away to see if both Amy and I would be willing to do a very similar presentation for their class as well. Originally they wanted us to be a part of a conference that involved, professionals, students, faculty, patients, and caregivers, however the dates just didn’t align on our end so we ended up doing a presentation one a Friday afternoon after their classes had let out. This time around, I knew what to expect, I knew that I would be talking and sharing with these students and I knew that there was a pretty great potential that I would again open myself up and bare my scars…. So I took the time to over-think it and I was nervous, but talking with my occupational therapist on the 2 hour drive to Saginaw helped so much. To our surprise there was no professor or instructor present that Friday, and no one was requiring that these students  were present for our presentation. In fact, they  arranged this lecture on their own time, because they wanted to be there, they wanted to meet the two of us, and most importantly they wanted to learn from us.

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Realizing that, put my mind at ease right away. As I sat on the table and listened to Amy give her breast cancer background and her post mastectomy cording intro, I realized that again I was right where I was meant to be. My OT Amy, is quite amazing herself and also happens to be a young, two-time breast cancer survivor herself, so she comes with expertise from both a professional and a personal level. She explained what happens to a woman’s body during and after breast cancer, and breast surgery, and she talked about the struggles that we breast cancer warriors face every single day.  Each and every student was hanging on every single word. I found myself taking in all that she was saying and in a sense educating myself  “on the other side of my breast care”. That was until she got the the part where she explained that typically, post mastectomy cording takes about 4-6 weeks to break up, and that it usually gets better, but that I was her  special case, because my cording is very pesky and complicated in that it keeps returning with a vengeance thus proving that I am again that .01% that broke the mold. Oddly this surprised me. Amy then worked my cording in front of the class to show how she stretches, pulls, and even tries to break the cords that restrict the movement in my shoulder and arm. Let’s just say she didn’t hold back, so it was at times hard to hide the pain. OK it was quite obvious that it was painful….  but I did my best to smile through it. When it came time for me to share the real battle scares, the nerves had settled and it just felt right. Honestly if felt very much like an intimate conversation with a somewhat large group of people, if that is at all possible. The students were again, quite respectful, engaged, and almost captivated at what both Amy and I had to say, which meant we again walked out with no regrets. I feel so honored that I was able to be a part of Amy’s presentation and again I feel very honored that I was able give the students from SVSU a first hand look at what one of their future patients might be facing.
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#sharingandteaching #mypersonalpinktime #SVSUotprogram

The words I’ve been longing to hear

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So today was the day. Post treatment oncology check-round 2. In some ways I have been looking forward to going to this appointment just because I would get to hug my amazing oncologist and my nurses, but I do have to admit that there is a certain amount worry that tends to creep into my mind in the days, minutes and hours before I head to my oncology visits. I have felt it a little more this time around because of a few articles that found their way onto my feed in the past two days. 2 articles in particular that were written about my exact cancer and how it can become metastatic and spread to the entire body as well as another article about someone who is currently losing their battle with cancer as I type these words. The good news is that, I can finally glace at these headlines, and even read these articles without bursting into tears and tumbling into an obvious emotional tailspin. But deep down the words still evoke a certain amount of fear and unsettle my calm, positive, and optimistic demeanor just a bit.

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False Progress

I was really impressed with the fact that I was actually able to fall asleep during a medical appointment for oh 3.5 minutes during today’s… Correction yesterday’s acupuncture clinical trial appointment. That was until it occurred to me that those three minutes of sleep tricked my body into believing it had gotten a full nights sleep.

So here I lay; with bloodshot and burning eyes, very achy joints and muscles, and a mind that is going a mile a minute. After several failed attempts to “power down” my body and my mind, I am now watching HGTV reruns and dreaming up passion projects, all while wondering if I should just fully give in, get out of bed, and write. I’m mean really, if I’m going to be awake all night, I should at least have progress to show for it right?

Early menopause induced insomnia and joint pain is the worst. Here comes sleep medication round two. Fingers crossed

‪#‎imtooyoungformenopause‬ ‪#‎insomniastinks‬
‪#‎mypersonalpinktime‬

My Christmas Wish

As a mom going through cancer treatment it’s really hard not to feel guilty about what your treatment and care is taking from the ones you love. I feel like Corryn has missed out on so many fun things this year because of me, so there was no amount of pain that was going to keep me from taking her to experience her “magical Santa moment”. As we got her ready to climb up on to Santa’s Lap and tell him what she wanted for Christmas, I overheard Jordan as he whispered into Corryn’s ear “tell Santa you want your mommy not to be sick anymore… that’s what daddy wants this year”. I’m not sure how I did it, but I managed to hold back the tears that were filling my eyes in this photo.

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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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First 3 Month Oncology Appointment

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I met with my amazingly sweet surgical oncologist today. It seems like forever since I have seen her, but she and my chemo nurse greeted me with a big smile, a hug, and told me I look incredible which made me feel good. I am still very anxiously waiting on the results from my blood work, but I’m happy to report my appointment went well. I do have some residual painand loss of mobility in my arms due to the double mastectomy, so she sending me to the Spectrum Health Star Oncology Rehabilitation Program for physical therapy and she is also putting me into a acupuncture trial that treats the awful side effects to the hormone therapy I am on. But otherwise things are looking pretty good and I am still on track for 3 of my surgeries on December 15th. Fingers crossed my labs come back good and my breast cancer marker has went down…

Photo was taken the day Dr. Melnik told me I needed Chemo and radiation.

 

Chemo Round One

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I started my day at Lemmon Holton at 7:15 with a somewhat tearful, very long, tight, and powerful embrace from my biopsy nurse Jan who I now refer to as my sister-like forever-friend. Through her connections I also got to meet with my very first nurse Susan and blessed to have had the opportunity to have a very special conversation with her as she was my diagnosis day one nurse and there with me when I was hit with the news. I also met one other breast care nurse I hadn’t met before who is follow my page and had great things to say before heading up to the 5th floor infusion center. This was exactly what I needed in more ways then I can count.

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