MY STORY (my title)

TICKING TIME BOOBS (my husband's title)

            I need to start this story by telling you why I have decided to share it. There are four main reasons. One, because I don't want to forget any detail from this past year. Two, because Ali is not going to remember this past year (hopefully) and I want her to hear this story and understand some of the emotion behind it. Three, because this is the most therapeutic thing I could think to do. And four, (the most selfish reason of all) because I do not want to keep repeating this story. With everyone asking me, it is so much easier to just send you all to one place to read this story.

            To start at the very beginning would be to start in my early twenties. During my engagement to my best friend, love of my life, now husband, and most recently my nurse and caretaker, I had my first procedure. I had three fibroadenoma tumors removed from my breasts. I have now learned that these were most likely misdiagnosed, but that is what I was told at the time and I am going to stick to my diagnosis for now.

            Fast forward a couple of years into our marriage when low and behold another tumor is found. I have it removed and I am told that I have odd breast tissue. I didn't seem to think too much about it. A couple of years later another tumor. I have it biopsied and told that indeed it is another fibroadenoma and instead of having it removed "let's just watch it". Not being a big fan of needles or surgeries I gladly oblige my doctor and run with her advice. After a year of "watching it" get bigger every week I finally show it to another doctor. He said it must come out and a week later I find myself in another operating room, being cut again, and relieved that this foreign THING would soon be out of my body.

            April of 2013, after the results were back from my procedure, I am called into my surgeon’s office where he informs me that my tumor came back as a Phyllodus Tumor and these are often misdiagnosed as fibroadenomas. The wheels started turning in my head (as you can imagine). The doctor proceeds to tell me that this was mostly begnin but had some abnormalities and that if he had known prior to surgery he would have taken out more tissue giving me greater margins. He tells me that it is very rare (less than 1% of all breast tumors) and that I need to be very proactive. Mammograms every six months and self-check about once a month at least. So I go on with my life.

            January of this year (2014) I feel a lump. Well more like a hard knot in my other breast. I remember thinking, "Bummer. Another tumor, another surgery, another week of resting and healing, and who has time for this?!" So I do what any good patient would do, I don't tell anyone. I keep it to myself because I just wasn't ready to go through yet another procedure. The end of February I went away to a women's retreat where the theme was "Faith in the midst." I heard some awesome speakers talk about their faith and God in the midst of their tragedies and decided that I needed to come home and deal with this annoying little tumor. Little did I know that God had filled my cup and I was going to need His help more than I ever had before.

            I made an appointment and that next week I was at my yearly physical where I showed the knot to my doctor. She felt around and told me that she wanted me to go for a mammogram the very next day. I heard the urgency in her voice, but just thought that she didn't know my history and was being just a little overprotective. But I did what she asked and went for my mammogram, ultrasound, and diagnostic testing the very next day. I would never normally ask my Husband to come along with me to a mammogram appointment, but I really feel like God laid it on my heart to have him there that day with me. And of course when I asked he didn't hesitate to come along.

            I leave my husband in the waiting room, go back and start the fun!! It was the longest mammogram I had ever been through (and I have had a lot in my day). It was also the most painful, which I thought was odd. I knew it was not good when the tech told me "that I had a lot going on". They then send me into the ultrasound room where they start ultra-sounding my left breast and then inform me the doctor was coming in to speak with me. I should have jumped off the table, ran into the waiting room and got my husband. I mean who cares if I only had a robe on, but instead, I lay there and wait. When the doctor came in he began making small talk while he was ultra-sounding me and to be honest I only remember one thing he said to me and that was "You have nine tumors in your breast and we need you to see a specialist right away".

            I got myself together to leave, walked out into the waiting room where my husband was anxiously waiting on answers, and announced that we would talk about it in the car. We walk out of the building and I blurt out "I have nine tumors in my breast. Isn't that funny?" I wish I had said, no yelled, “Run. Run for the hills. It is going to be a long, ugly road and you don't want this." But I didn't say that and what would have been the point? I am married to a saint who would never "run, run for the hills". I remember crying, laughing, and feeling a wide range of emotions on the way home that day. I remember picking my kids up at school and feeling like I was in a cloud. I remember looking at other women and wondering if anyone else had gotten bad news that day or if anyone else had breasts eaten up with tumors. Weird thoughts I know, but it had been a weird day. By the evening, after much debate in my mind and heart, I had informed my family of the findings and decided that there was no need to worry until I had gotten more answers. Little did I know that those answers would be so hard to come by.

            I was part of a Bible study on Wednesday nights during this time with a wonderful group of women. "He Speaks to Me" was the title of this study and wow did I ever need to hear from God. I had made up my mind that I was only going to tell my family, but at my first study with these ladies we broke into small groups to pray. For some reason I blurted out what had happened to me at my mammogram and one of the ladies in my group passed along a name and number of a doctor at Emory Winship and I figured this was as good a place as any to start my journey for answers.

            I call to make an appointment with this doctor to find out that he only takes patients with a cancer diagnosis (which I did not have) but that another doctor in the group would be more fitted to help me. Come to find out it was the same doctor who helped my Mom beat an extremely rare form of breast cancer, Pageant's Disease, the summer before. I (and my husband) collected all my films and rushed them down to Emory. We were both so anxious to get answers and to get help.

            Ten minutes into my first appointment at Emory I am being told that after seeing me and my films that I am most likely looking at a mastectomy of that breast. That over 80% of my breast is affected by whatever this is. They send me down to the breast center for a biopsy of one of the larger masses so that they know what they are dealing with when they decide to do surgery. This is where I wish my story stopped. That they did the biopsy, took my breasts, and I am recovering nicely. Unfortunately it is only the beginning.

            I lay there for my biopsy while the doctor and nurse talk as if I am not even there. With comments like "Wow, never seen this before" "This is the most bizarre thing I have ever seen" "I can't wait to read the case studies they write about you". Not the most encouraging remarks, but hey we are getting answers and that is all I have ever wanted. I anxiously wait over the weekend and Monday morning my caller ID pops up EMORY! YAY!! Answers finally. "We are not really sure what to tell you. Your biopsy results came back inconclusive." I had prepared myself for "You have another phyllodus tumor, you have a fibroadenoma, you have cancer"....anything...but not "we don't know"!! I deflated. I was stunned at the questions the surgeon was asking me. None of them applied to me and I felt like I was in trouble for some reason. I felt like I had done something wrong because I had these tumors that the doctor couldn't put into a nice little category. I called my Mom and unloaded. All of the emotion that had filled me up in the past month began to overflow and my poor Mom was there to hear it all.

            I began to compose myself and a couple of hours later I receive a phone call from the oncologist. She begins to reassure me that everything is going to be ok, she had gotten the results from the biopsy and was going to order more tests, and that she knew that I was upset....wait....how did she know that I was upset? "Well your Mom called me"...wait...WHAT?! I felt like I had been transported to the playground in grade school and my Mom was fighting my battles for me. How embarrassing. I add this to my story for a little comic relief and to let Ali know that I would do the same for her! I guess at the end of the day we are always our Mom's babies and my Mom was in beast mode that day.

            The doctor wants me to come back in so I do. At this appointment she says that she thinks my biopsy incision has gotten infected. My husband and I both try to tell her that we think it is not infected but that the tape they used at my incision irritated my skin. This is common for me, but she insisted that I go back to the breast center and have them drain the incision and send it off for testing. In the meantime I start an antibiotic and wait for results. AGAIN! A couple of days later I get a phone call that there was no infection and to stop the antibiotics. Ok...I can live with that. Then the real trouble begins.

            I wake up a day later to find that my incision is not healing and instead is draining a fluid like nothing I had ever seen. I call Emory and ask what in the world is going on and they tell me, according to the culture that has come back, that the tissue in my breast has become necrotic (dead) and it is draining out. "What in the world is going to be done about this?" I ask. I am then told to wear a panty liner in my bra to catch the fluid until they see me again. And I wait, and I wait some more. Finally my skin is turning purple and it is only getting worse. I have my husband start taking pictures of it and documenting the change from day to day. I continue to call Emory without any urgency from them. I begin to worry....constantly.

            I continue to go on with life in limbo. I find myself wondering if other women are walking around with panty liners in their bras and if this is completely normal or if I in fact need HELP! In the meantime I have had two more holes form and they are leaking as well. So now I am up to two panty liners in my bra and it was only getting worse. I finally convince my doctor at Emory to see me again. She spends all of five minutes with me and says that I need to see a Rheumatologist. Ok...fine I think. Maybe I do have some sort of auto-immune disorder. Again, all I want is answers and if a Rheumatologist can give them to me...I will take it.

            I want to be clear. I know that it seems as if I am bashing Emory and, honestly, it is a sore subject with me, but I am not trying to be ugly. They are a research hospital. I can look back and see that after my biopsy I no longer was a patient but a research subject. I know that what I have is rare and unusual and that to them I was an exciting case that they could research. At the end of the day though, I am a wife, a sister, a daughter, and most importantly a mother to two of the most precious children in the world (yes I know I am bias) and I am not a lab rat. I am thankful for everything Emory has done for my Mom, for other patients, and for our community, but it was not a good fit for me.

            Ok, back to my story. After a brief conversation, the Rheumatologist cleared me of any auto-immune disorder and honestly could not help me. Back to square one. My oncologist then tells me that she wants to start me on a steroid (I believe at this point they were grasping at straws). I hesitantly begin my steroid treatment. After two weeks of turning into a crazy person, they tell me that there has been no change in my breast tissue. Ok...so where do we go from here. I ask "can we just take them off of me already?" My breasts that is. They say, well let’s try a steroid some more. I wonder how long and they say maybe two years. Yes...you read that right. YEARS!! I am happy to be a part of research and to help other women but I am not going to wreck my bones, be mentally unstable, and all of the other things steroids do for two whole years. This is when I decided to no longer be a lab rat and start being selfish.

            I am leaving out of my story all of the times my blood was taken, all of the tests that were run, all of the times the doctors were left scratching their heads, all of the hours I spent on the phone with my insurance company fighting for coverage. Why was my white blood cell count high? Her poor man's leukemia test came back negative, but where does that leave us? I am leaving out all of the different medicines I was put on that didn't make a difference at all. Why? Because I am already on page five of this story.

            I do want to mention that I have the most amazing job where I am surrounded by wonderful prayer warriors. At this job I have had the honor of leading a group of moms once a month and our group is called cafe mom. I had not shared for two months any of this going on with me, but this meeting I felt led to let them in on my struggles. I wanted prayers and prayers alone. But as always, God delivered in a big way. A mom in that meeting told me about an oncologist that members of her family had used and sang her praises. That weekend on Easter Sunday I woke up and four more holes had formed in my breast making it a total of seven holes draining necrotic tissue. I began to research this doctor and felt lead to call and see if she would see me. A week later, I found myself in the waiting room at Northside Cancer Center, waiting to see the doctor that would be an answer to prayers.

            Brian was sick and so I dragged my Mother along for this appointment. Mind you I did not drag her kicking and screaming. She was so happy to be there for me, like she has always been my whole life. I did make her promise that she would not call my doctor later if she did not like something she said. I should probably go ahead and tell you that within minutes of meeting her I knew I was in the right place. She agreed that my case was extremely odd but that there were things that could be done. In two hours of being at her office I had gotten more answers and more tests ordered than I had after three months with Emory. Just saying.

            Some of the tests ordered were a CT scan (to mainly make sure that whatever was attacking my breasts was not attacking any other part of my body) and an MRI of my breast to see if they could make some sort of headway with a diagnosis. I was also sent to an Infectious disease doctor to eliminate anything crazy like that and I was sent to a surgeon. The CT scan, after insurance finally approved it (that is another story for another day...insurance....blah), came back fine. I did not have the same luck with the MRI. I was told by my oncologist that it was, and I quote, "a mess". Although they could not still give me a diagnosis, they could tell me that my breasts had become "ticking time bombs". The MRI results and all of my films were brought to a panel of doctors at DeKalb Medical and they and my oncologist decided that it was not good and a bi-lateral (double) mastectomy was in order. They realized after my MRI that there was no point in biopsing any more areas because whatever this was had taken over my breast and the only option they had was to remove it from my body.

            In the meantime, I had also met with the surgeon who was going to be performing this mastectomy. Oh, yea....remember when I said I had holes in my breast that were draining dead tissue...yea those were still there. The surgeon informed me that he would be extremely uncomfortable doing a mastectomy with reconstruction (what I wanted) with these holes present. Germs had definitely gotten in these holes and it was just too dangerous. So he suggested an A-Cell treatment/procedure. Ever heard of that? Yea, me neither. But I agreed to it and off we go.

            I find myself at DeKalb Medical getting prepped for surgery and thinking here I am again. Another operation, another anesthesiologist, another recovery. You can imagine that by now I really don't like my breasts. Only this time it was not a simple removal of a tumor it was taking off my skin, layer by layer, until they got to the start of the holes and then they would insert cells from pig bladder tissues. Yea sounds gross I know. I couldn't help but wonder if I would wake up from my procedure oinking like a pig :) It began to heal nicely. I had to drive to my surgeon's office three times a week for them to change the bandages and put more cell "stuff" in my wound. I have gotten to know his staff very well. And let's just say that I don't know what I ever did before knowing his Medical Assistant. I feel like she has seen me at my best, my worst, and has become a fast friend.

            I continue down this road waiting for this to heal enough to move ahead with the mastectomy. I meet with the plastic surgeon who goes over my reconstruction and I see the light at the end of the tunnel. I continue to get my bandage changed and keep on keeping on. The entire time I can feel all of the other knots, but I know what is in my future so I don't concern myself too much with them. Until July 1st.

            I wake up like it is any other morning and Ali wants to paint her nails. I sit down to have some girl time with my daughter only to feel a pain in my breast that was not pleasant and to find that on the other side of my breast another hole had formed and was leaking that same fluid as before. I started screaming. I ran to the bathroom, closed the door, very determined that my kids were not going to see me lose it. But behind that closed door, that is exactly what I did. I LOST IT. I couldn't start over again, I couldn't go through this again, I started crying, screaming, stomping my feel, and I think it is what you would call a full blown temper tantrum. And the phone calls began. Every doctor I had ever seen got a phone call from me that day. I didn't know who to blame, who to be upset with, who to yell at, who to cry to, I was a mess.

            My surgeon called me back right away (I found out later that he actually stepped out of surgery to call me). He asked me to come in the next day and that is exactly what I did. My husband by my side I began to cry in his office. I pleaded with them to not let me go through this again. I blubbered like an idiot, that I didn't have it in me, that I don't know why God thinks I am so strong but I disagree with Him. This went on and looking back I am completely embarrassed and have since apologized for my erratic behavior. They assured me that I was well within my rights and that they understood my emotion, but really how could they? I was told to go see another doctor to eliminate some questions and once those were eliminated everyone was in agreement that it was time for the mastectomy. Unfortunately with new holes in my breast, reconstruction is off the table. The plastic surgeon will be there the morning of surgery and will help the doctor make incisions that are conducive to reconstruction in my future. Hopefully sooner rather than later.

            My surgery is scheduled for August 13th. I wish I had a diagnosis, but unfortunately they do not think they will know what this is attacking my breasts until after they are off and sent away for testing. I know that this is not the end of my story. I went this week for genetic testing and will receive the results from those tests in about a month. I know that the results might lead to more tests, more surgeries, and could affect my entire family, but all I have ever wanted is answers. I am praying the genetic tests will give me some. I don't know what they are going to find when they remove my breasts and I am prepared for whatever treatment I am asked to endure, depending on their findings.  I am praying that I will be able to have reconstruction at some point and that will mean more surgeries and I really am ok with that.

            I write all of this to say that I don't know why this is happening to me. I don't know God's will for my life, nor will I pretend that I do. His ways are greater than ours and he has a reason for this season of my life. I wonder if all of this has happened for my daughter. Maybe this is happening to me to save her from going through this one day. I don't know. I did ask God during one of my precious quiet times with him to give me a verse to cling to. That I needed a verse to repeat, to memorize to help me through some of my valleys and he gave me this..."Dear friends, do not be surprised at the painful trial you are suffering, as though something strange were happening to you. But rejoice that you participate in the sufferings of Christ, so that you may be overjoyed when His glory is revealed" 1Peter 4:12-13. Yes I know that this was not written about breast cancer in particular but it is something strange happening to me and I am rejoicing in Him and I will be overjoyed when His glory is revealed.

            God has done so much for me this past year. The friends he has put in my path, the group of women he has surrounded me with, the everyday insurance battles that cannot be explained except for his intervention, the list goes on. I never want my story to be told without Him getting the glory. I thank Him every day. He has taught me so much and one thing he has taught me is to cling to him. And some days I am literally CLINGING! I know that some women will read this story and will instantly think of someone you know who has had it worse than me. For the longest time I didn't want to tell anyone my story because I know some women only wish that their struggle had been this easy. I had a friend tell me one time that if it is big deal to you then it is a big deal. I would encourage everyone to share their story. It is yours and it is important. Nothing is too big or too little for God. Give it to Him and then watch his goodness overflow!

            I welcome prayers, positive thoughts, words of encouragement, but what I don't want is to be treated any differently. I don't mind sympathy, but I have never wanted pity. I also feel like I should tell you that questions are hard. I have waited to let many people in on this journey because we were waiting on the answers to questions everyone would ask, but those answers never came. When I do receive more answers or find out that answers are never coming, I will happily update my story.