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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Packing my surgery bag again

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It’s like a ready to deliver pregnancy bag, just without the prize at the end.
The past few weeks have been quite a roller coaster with this whole pneumothorax thing, but after a few trips to different specialists, several repeat CT scans and being sent to the ER a few times, the pain is only getting worse along with the other symptoms and the hole appears to be getting bigger rather then healing on it’s own, so I am having surgery this morning to place a tube in an attempt to try to get the trapped air out and allow my lung to re-inflate. Because of my size and the size and placement of the hole, my thoracic surgeon is having intervenes radiology place the line and then I will be placed in his care for the next few days. I was told to plan on staying 4 days in the hospital, but if things go extremely well I may be able to come home sooner.

Because of the location of the hole it’s a little more complicated and there is potential that another portion of my lung could be nicked in the process, so I will be watched pretty closely for the first few days. My husband and I joke that Spectrum should give some sort of punch card out for frequent visits to the OR but sadly I am becoming a pro at this surgery stuff. I am not worried about the surgery, in fact this should be my easiest one yet, however my nurses are warning me that this will be quite painful which is kind of bumming me out a bit. There are so many other details to all of this that I will share a bit later after I come out of the fog, but first I need to finish packing my bag and get in the shower. We have to be at Butterworth at 7 and my procedure should take place around 10. Here goes nothing…..

#yetanothersurgery #mypersonalpinktime

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

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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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

A Family Hospital Visit with Mommy

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My beautiful friend Sam, my husband, and my new found Friend Brooke captured photos and footage from my surgery day so there will be more to come, but I wanted to share this one image of my little family spending time with me while I was bound to my hospital bed for a few days post surgery. Luckily they had me nicely medicated so my pain was controlled and Corryn could get close allowing mommy hide a her pain with smile.

For my my awesome sister Kate who lovingly mothered me a bit today and will love hearing she’s right: Yes I am the crazy patient who always wears makeup on surgery days and the crazy patient that wets her budding hair out of her water cup, after her 4:30am vital checks in the hospital, I am the crazy patient who keeps facial wipes, deodorant, perfume and make-up by my bedside so I can freshen up and even apply a little eye makeup at least, so I’m not looking too much of a wreck when my doctors round around 5:30-6 am. My awesome but motherly sister thinks sometimes I need to let people/especially my medical team see just how awful I feel to ensure I am treated for all of my symptoms and quit making myself look healthier then I am with make-up and a big smile. (She laughs when she mothers so it’s ok). In retrospect she is probably right. Who am I kidding? After not letting me shower with left over surgical iodine all over my body and being stuck in a hospital bed for 4 days my medical team, and my visitors would have given me a pass to look like the hell I was feeling, huh? But I’m a girl at heart and even at my sickest moments, I want to look my best. Silly I know.

Another Scary Cancer Scan Down:

13043515_932071903581240_1882037906177800417_nI got up this morning like normal this week, my husband helped me out of bed which is a pretty painful process post breast surgery and grafting, he helped me to bathe and to get ready, I put my optimistic game face on, struggled but get down part-one of another cylinder of pre-CT scan liquid, and we left for my first appointment, which was an acupuncture appointment for my breast cancer clinical trial. I was still obviously hurting, feeling pretty weak, kind short of breath and a bit nauseous, but mentally I was good. I actually thought acupuncture was a good way to start a scary day, but while lying on the usually calming table my eyes started to well up with tears and I realized I am little scared about this test. People always ask me how is it that I am always so optimistic, so positive, and how it is possible that even in the scariest and most painful moments I still have a smile on my face. The truth is I don’t know. I guess I am just naturally an optimistic and happy person and I am pretty good at hiding the pain and the fear, but I will admit that although I am naturally this way, it doesn’t mean that I’m not sad, scared or even worried a times. Maybe it sounds crazy to say that sometimes I am both optimistic and scared at the same time. But really I just think it means that I trust my medical team, I have faith, and I have learned that I am strong enough to face each step of what has become the rest of my life with cancer.

Rest and Recovery

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After a few days in the hospital, I am officially home and resting. I will admit that I although I was still in some pain from my first round of grafting in December, I really had blocked just how painful this aspect of my surgery was going to be, but the extreme muscle weakness and pain came flooding back into my mind, the moment my post-opt nurses tried to get me out of bed for the first time. To be completely honest, I am in a LOT of pain and I am moving really slow so far, but at least I am home. At this point there isn’t much that I can do on my own with the compression garments that I have to wear from my chest down to my knees. Ok, to be real, I cannot do anything on my own. My husband has to help me remove my compression garment so I can use the bathroom, I am not allowed to shower or take a bath yet so he has to help me sponge clean and wash my hair, and he literally lifts me into bed and wipes away the pain induced tears that fill my eyes when getting into bed.

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Preparing to Tackle Another Surgery

The last few months have been difficult and scary at times, but have also been a really great time for self growth and discovery. Although I am still dealing with some and probably always will be dealing with some of the very limiting and painful post-breast cancer side effects in addition to the side effects from the hormone therapy I will be on for the next 10-15 years, I will admit that, I do feel a tiny bit more like myself with each day that passes, which is uplifting in itself. Over the past few months, I have had several routine appointments, blood draws, scans, and X-rays that in most cases have lead to the dreaded “we have to run further testing to confirm this is not a new tumor and to confirm that your cancer is not coming back” conversation. As you can imagine, this keeps my life on an emotional roller-coaster, but it also continuously reminds me to be thankful for each and every day at the same time. I will be the first to admit that hearing those words NEVER gets easier. With each phone call my heart skips a beat and plummets into my stomach and even with my sometimes blind optimism in check, I at times still find it hard to keep my mind from going to dark places in those moments. So far a second chest x-Ray has confirmed that an opacity found on a scan is not a new breast tumor, and an echocardiogram has confirmed that I do not have any more damage to my heart then expected after taking a chemotherapy drug that decreases heart function, in addition to receiving radiation treatments that cause heart failure later, but I am still in the process of determining why my liver levels are consistently high. Elevated liver enzymes can suggest a cancer recurrence so although my levels are not dangerously high, my doctors are keeping a very close eye on things. We have been repeating and watching my blood work for months, and I have had an ultrasound done that  revealed a small mass on my liver that they actually found and documented in a previous scan. However, the good news the mass hasn’t grown too much over the past year, so my oncologist is hopeful it is not cancer. Just to be sure, I will be having a CT scan in the coming weeks to rule this possibility out all together.

A day full of appointments

Today was full of appointments. I started off with a little post surgery Physical therapy. Ok a lot of post surgery Physical therapy. I love Amy, but my the cording in my arm, chest, and neck do not. We are making progress and even broke one of the cords today…. I’m not going to lie and tell you that wasn’t painful. But, Like many things, I’m realizing this is physical recovery is going to be a long process. From there I met with a very special past nurse and got to chat with a very special previous doc for a bit as well, and then left for my plastic surgery appointment.

My surgeon made my day by telling me that I’m one of her most inspiring patients. Little does she know, she’s pretty amazing herself. It’s a funny feeling to know that your doctors are following your posts, but I only have great things to say about everyone on my medical team so the more I think about it, I am glad that they stop in from time to time to hear that they are loved. It’s so important to feel good about your medical team. I feel pretty blessed to have each and everyone of them in my corner.

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