Addressing The Silence And Moving Forward

Would you believe me if I told you that before cancer, I used to be the shyest most reserved person you had ever met, and I would have done anything to avoid talking about my own feelings, personal thoughts, or struggles?

2 years ago, Cancer was NOT even on my radar. In fact, Cancer was something that I thought happened to other people, not something that I thought would ever happen to me… Until it did.

As many of you know I found the lump myself, but not because I was doing a self breast exam. I found it because I had been experiencing really sharp shooting pains in my chest pains for at least 6 months. When the pain was bad I would push the palm of my hand up against my chest. That’s how I found the lump. I didn’t tell anyone about it for a few weeks, but my mind was filling with fear and all I could think about was the fact that cancer could take me from my family. After doing a lot of research I realized that I had to tell my husband….. and I had to make the call. I saw my OBGYN first. She said that based on my age alone most doctors would recommend watching it for 6 months, but she said she wasn’t going to take any chances with me because she had a family history of breast cancer. She sent me for a mammogram, an ultrasound and Biopsy right away to rule out cancer. After two mammograms, I was sent to have an ultrasound. My technician was about midway through the scan when she said she had to talk to the radiologist. She tried desperately to make it seem like a routine part of the process, but I was starting to see realize what was happening. She was gone for at least 20 minutes so I had a lot of time to let my mind wander but I was oddly no longer thinking all the scary cancer thoughts, instead my mind was racing with moments from my life that made me feel like that exact moment was all part of a bigger plan for me.

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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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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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Lung Scan Results Are In

Screen Shot 2016-07-30 at 1.28.53 AMGood News….Lung Scan Results are in:
The results show that the nodule on my lung is stable and it looks to be benign which is the very best news! No more cancer. Big sigh of relief there!

On the bummer side, the test also reviled that I do have a small hole in my lung causing pneumothorax, which explains my shortness of breath. My oncologist wants me to go to the emergency room where they would either insert a chest tube or needle into the lung to help it re-inflate it, if it gets worse this weekend, or if I’m ok the way it is, she wants me to come in Monday for a chest x-Ray to see if it will eventually correct itself or if we need to fix it. A bummer of course, but it’s treatable, and it means that the shortness of breath is not a lasting or long-term side effect from the chemo. This I am very thankful for. 😀

#mypersonalpinktime

Full surgical update

surgery_1140Surgery itself has never caused me any anxiety for some reason, however I was a little nervous going into this last surgery. Not nervous to be put under again or even to add more surgical trauma to my ever growing list, but I was nervous to wake up and have to go through the painful recovery that I knew I would be facing being because I had almost the exact surgery a few months back. I knew that I would struggle to even hold my own weight in the days immediately following my surgery, I knew it would take months to heal the painful bruising and incision sites and that I wouldn’t be able to hold or really play with Corryn, and most of all I knew that it would again set my body back in the overall cancer recovery department.
surgery2_1140Like usual, I didn’t sleep a wink the night before surgery because my mind had gone into busy nesting mom-mode and was very much preparing to be physically down for a awhile, but as usual meeting my amazing photographer/friend Sam at the hospital, very much distracted me and made those surgical prep hours fly by. In fact, there were a few moments where I had actually even forgotten why I was at the hospital all together which is pretty amazing. We also had my mom with us as well as our new friend Brooke, who was there capturing video for a project I have in the works, so I could even go as far as saying that this time, was “fun”. Before I knew it I was removing my healing and protection jade necklace, and they were connecting all the tubes and wires and wheeling me off to surgery. Before going into surgery, my amazing plastic surgeon had laid out her plan for me, which included cutting out some irritated scar tissue that had formed around my chemotherapy port site incision as well as injecting some steroids into the site to keep the irritation from returning, the removal of my left tissue expander, the placement of my left breast implant, phase one of my left nipple reconstruction, fat and tissue grafting from my thighs again and placement into both breasts, as well as  immediate stretching of my right breast skin, and placement of my right implant; if possible. But, we had  also talked about placing a tissue expander on the right side if all of this wasn’t possible once she got into surgery. The list was long and again meant a pretty big recover,  but I knew it would be great to make all of this progress in a big combined surgery.

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A day to honor Mom

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The day I became a mother was the very best day of my life. I had literally dreamed about becoming a mommy from the time I was in elementary school, maybe even before. This may sound weird, and I am not sure I have ever admitted this to anyone, but where most kids excitedly looked through the big JCPenny catalog picking out toys, I looked through the catalog picking out the children I would someday have…. And of course picking out all of the cute clothes I would someday dress them in. When I was asked what I wanted to be when I grew up, I always replied with; “I want to be a mommy”. My love of children only grew through the years and I was quickly labeled as the one most likely to have a gaggle of kids by my peers. I started babysitting all of the neighborhood kids at when I was 10, and I loved every second of it. When I was in high school I took a job working in a daycare after school and later I worked as a nanny for two amazing baby girls that I still refer to as my first born. I fell in love with every child that I had the pleasure of caring for, and I often joked that I was a second mommy to many, however the love that fills your heart as your baby grows and develops inside of you, and the joy you feel in the moments you bring that baby into the world, are nothing short of awe-inspiring, life-defining, and indescribable for those who haven’t felt it for themselves.

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Happy Nurses Day

  
I just wanted to give a VERY BIG shout out to all of the amazing nurses out there who are selflessly dedicating their lives to helping others. 

Thank you for holding our hands when we face the unthinkable, for caring for us in ways that we never thought we needed, and for listening when no one else understands. Thank you for taking the time to teach and inspire when our worlds seem to be spinning out of control, for showing compassion when the fear and the sadness takes over, for motivating us to reach goals that seem unreachable, and for cheering us on when every step along the way. Thank you for taking the time to truly get to know us, and for knowing when to be tough, but also when to be human. Thank you for making us smile when the weight of the world is on our shoulders, for investing a little bit of yourselves in to each us, but most of all thank you for all that you are and all that you do! The world just wouldn’t be the same without you. 

To be real…. I don’t know where patients like me, would be, without amazing people like you caring for us during our hardest moments. From a slightly biased standpoint, I have to say that I have been blessed to have the VERY BEST nurses caring for me over the past year as I faced the awful “C”, but to be fair I have never met a nurse who wasn’t willing to go above and beyond for my care… and for that, I will be forever grateful. 

Happy Nurse’s Day to all of the amazing nurses out there!

-Tammy 

#Mypersonalpinktime

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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Sharing and Teaching Round 2

_DSC3460 copy_1140When my Occupational Therapist asked me to help and let her do a live demonstration on me 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 so 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 should I say 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, about a month ago. 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 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 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.

_DSC3537 copy_1140Realizing 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 is also a young,  two-time breast cancer survivor, 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 get’s 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 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.
_DSC3566 copy_1140We both actually really enjoyed every minute of it and mentioned that we could have spent hours with this delightful group of students. It was fun for even my husband Jordan who photographed some of the moments from the day, and playfully mentioned that the entire class had now been to second base with his wife. 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.
#sharingandteaching #mypersonalpinktime #SVSUotprogram

Same Infusion Chair One Year Later

IMG_8596_1140So today marks the one year anniversary of the day I started my chemotherapy treatments at Lemmon Holton cancer pavilion and I find it ironic and yet very very meant to be that one year later I am again spending my day here at Lemmon Holton. As I walked …. ok hobbled the floors, to different appointments, my mind was flooded with memories of that first, very long scary day.

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The tearful hug I got from my amazing biopsy nurse and friend before I entered the infusion center, to the first nurses Jeanne and Mindy who put my mind at ease and made me smile and laugh through the fear of what was to come as they accessed my port for the first time and started the line that would deliver my first dose of the magic medicine that made me so sick yet also saved my life. I am reminded that on this scary day I was surrounded by the love and support of my husband Jordan and my dear friend Sarah and the virtual support of all of you and I am also reminded that one year ago today I met my now very, very dear friend, Liz.

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