The Trouble With Options

For me, writing never comes easy. I have to really sit myself down, sometimes with a bottle of wine, and let myself feel. I always talk about how feeling emotions is the best way to heal but we all know we don’t always practice what we preach. I sit here today, two years after the trip to Sicily in the middle of everything. I think back to that pain I felt while being in the most beautiful place I have ever seen in person, with everyone I would want to be with, with the best food you could imagine, but I was miserable. I knew there was beauty, but I couldn’t see it. I was with my loved ones, but someone was missing. I smelled the food, but I couldn’t eat it. I felt sick and all I really wanted to do was go home and sleep.

My mind starts to wander, and it takes me back to the beginning. Sitting in my third and final Surgical Oncologists office and I thought this would be the one. I couldn’t see one more, I was exhausted. After my exam, she sat my parents, boyfriend, and I down in her office. She gave us her opinion on a treatment plan. I still had so many questions, but she was so short with me. It aggravated me.  My family was asking questions and the walls felt like they were caving in. I couldn’t breathe and I wanted to scream. I needed this nightmare to be over. It was all white noise in the background and then I finally snapped. “EVERYONE GET OUT!”  I needed to be alone with this doctor. I needed to hear it straight from her with no interruptions or added opinions. I looked at her and I started to cry. I explained how frustrated I was, and she gave me little to no compassion. It didn’t make sense. I didn’t need her to baby me, but she was so to the point. Looking back, it makes sense. She knew what I needed to do and being stern about it was probably the only way I would eventually realize that I had no real choice to have the life that I deserved to have; a long one with the least amount of risk for a recurrence. I didn’t feel that way in her office that day though. Maybe I just wanted to hear that it was all wrong, that they made a mistake and I didn’t need to do anything. I could resume my life and forget this ever happened but that was obviously not the case. I felt anger and frustration and I left upset and unsettled. Mastectomy? How could I get a mastectomy? All I wanted was my life back and normalcy never felt so far away. I told my family that I absolutely did not want to work with her. I felt like I was back at square one. What the fuck am I going to do?

I went home and back to the drawing board. I researched other hospitals and other doctors. Since the day I found out I was sick, the number of doctors I saw made my head spin so why did I want to see more than I needed to? I didn’t but I still didn’t hear what I wanted to hear, which was unrealistic but I longed for it. I know in my head that the more options I had, the more confused I would be but the thing is, I love options. I love to weigh everything out and think of every potential outcome. We are talking about my life here in my own damn hands, sheesh. The troubling thing is, I can not control this outcome, and time is not on my side. Every day that I don’t make a plan, I am only getting more sick. That pressure sends chills down my spine and is enough to send me spiraling. It’s like being on a ride and you feel like you are going to throw up and you need to make it stop, you need to get off. You are screaming but no one can hear or understand you. Getting off isn’t an option. Cancer is a fucking bitch. I know what I need to do in my heart but I ignore it. I have a weird delusional hope that I was going to get off this ride and wake up from this nightmare. There is a point where you come to reality and have to trust your gut and follow it but I most definitely was not at that point yet. I wanted more doctors, I needed more options.


Another Year, Another Lesson

A little over a year ago I started blogging my journey through what felt like the longest year of my life. Although it was full of pain that didn’t make much sense at the time, it brought me to a completely different place in my journey.  As I started to write that year after my diagnosis, I learned that the most challenging part of the whole journey, was learning to live a new normal after it was “over.” The truth is, that was just the beginning and all of that trauma hit me pretty hard and new heartache was added. I had terrible anxiety thinking about taking you through such a personal experience with my treatment, my breakup, losing my job, and a whole lot in between. Every time I thought it was over and I could start to move on with my life, something new kicked me down, and my life unraveled even more.  Writing was never easy but every time that I did, I felt all of the physical and mental agony, but also growth and acceptance as I reflected. Growth is never easy, it is often painful and you don’t always see the results until some time has passed. Yesterday marked two years since I was diagnosed with breast cancer and like always, that is a trigger for me. I relive that day like it was yesterday and it’s paralyzing. I am beyond grateful that I am here to tell my story and my life appears “normal” like nothing ever happened, but inside I hurt. I hurt physically from the side effects of everything that my body endured with the multiple surgeries and procedures,  and I hurt mentally from the trauma of it all.  I hurt often but with that hurt, I am feeling all of my feelings. I am processing and accepting. I am building a new chapter of my life that looks a whole lot different, but what I have endured will always be a part of me. A light at the end of a very dark tunnel that I can brightly see and touch. We all have traumatic events in our lives and we all deal with those things differently. I never wanted to wake up years from now and have to accept everything after I had already moved on. I don’t like to brush things under the rug and I honestly don’t think I am capable of that. My personality is to feel and deal with issues. I remember going through everything and that was my fear,  with all of that adrenaline pumping through my body to carry me through, I wasn’t processing it all. Starting this blog was a way for me to do that and sometimes I wanted to share those thoughts and the recollection of my emotions, but sometimes I wanted to do that alone and not share in that moment, or sometimes I didn’t want to deal with it at all.  As new trauma and loss happened, it made it harder for me to share and I would lose sight of that light at the end. Most of the time that I posted, I was just laying everything out and you read it as I went through it. There are things that I didn’t recall happening or feelings I never felt until I typed them out. That has been such a helpful part of my healing and growth and I knew that maybe somewhere it could help someone feel like they are not alone when shared.  Your messages I have received have done just that. Everyone is struggling with something and your bravery in sharing and your extremely kind words have meant everything to me.  There is no timeline on how long it should take us to heal or where we should be at in that process. Everyone’s journey and how we cope with events and constant disruptions in our lives are unique to us. Maybe now that I have reflected and accepted certain things, I will have more courage and confidence to put it out there, and you will too. When we neglect our problems and feelings, things often get worse. Life never settles down, so dealing with hardships will allow us to keep moving forward in our journey. I am sure new things will pop up as they always do during reflection (and life) but I can’t stress enough, how important this step is in the process of continued healing and growth for ourselves.

With that said, I wanted to share those blog posts of the longest day of my life and give myself a boost of confidence that I made it another year and reflect on the extreme growth that has happened from writing this a year ago today.  Thanks for your continued support as I bare it all.

There’s Been A Mistake Part 1- It’s Cancer

February 8, 2017


I woke up on February 8, 2016 in peace. I slept at my parent’s house since my boyfriend was still out of town and started my work day. I went on my sales meeting and told my co-workers the good news. I told them it was all nothing like they suspected and that I did not have cancer. I was so relieved saying those words. I felt peace.

My meeting ended and my mom and I were putting our coats on to go grab lunch. It was 2 o’clock in the afternoon. My phone rang, it said “unknown.” I don’t normally answer unknown numbers but this time I did. I heard my doctor’s shaky voice on the other end as I said hello. “Hi Janine, it’s doctor E…I am so sorry but something didn’t sit right with one of the pathologist and he went back to your slides and cut deeper and well I am so sorry to say this, but there’s been a mistake, it’s cancer.”

White, everything went white. I looked at my mom and she started to scream,”WHAT? WHAT? WHAT?” she must have seen it in my face. I couldn’t get the words out, I tried, I stuttered, it’s cancer, it’s cancer.

My doctor was still on the line talking and I dropped to my knees, I was hyperventilating/crying. It’s like when you are dreaming and you are being chased and you try to scream, except barely anything is coming out of your mouth even though you are trying with all your might to scream.  I tried to get out “It’s cancer? Am I going to die? What Stage? Will I need Chemo? Will I die?” She had no answers.

She told me to get out a pen and write this down…

I scribbled some words she told me.. Ductal Carcinoma, Surgical Oncologist, and CALL IMMEDIATELY.

I remember her saying that they were waiting for my call. She gave me her number if I needed anything and I hung up the phone.

I dropped back to my knees on my parents bedroom floor. I lost control of every muscle in my body. I couldn’t breathe. I was screaming for my mom to call 911. I wanted to be sedated. I didn’t know how I would get through the next 30 seconds of my life without being sedated. I laid there in fetal position and cried, and cried, and cried. I felt like I was on a roller coaster going upside down and backwards and I couldn’t catch my breath. I couldn’t see straight. I couldn’t pull myself together.

I heard my mom in the distance making frantic phone calls. I heard her whispering over and over. “it’s cancer, they made a mistake. I don’t know, they made a mistake but it’s cancer.”  I heard this over and over again. My tears stopped, I couldn’t move. I was stunned. I felt paralyzed.

My little dog came over to me and looked so perplexed. He always panicked when I cried and he just seemed so concerned. I sat up, picked him up, and caught my breath. My boyfriend. I needed to call my boyfriend. Or do I wait? He had a flight late that night to come home. Do I just wait to tell him? I don’t want to ruin the last day of his trip. How am I supposed to wait to tell him this? He will be mad if he knew that I waited until he got home to tell him. FUCK. I call. I ask him to sit down, my voice is trembling and I can’t get the words out. This is surreal. I can’t get the words out. “Eh, so you know how they said it was benign? Well it’s not, they made a mistake, I have cancer.” I hear myself saying those words out loud. It doesn’t sound right. I have cancer, I have cancer, holy shit, I have cancer. He says he will be on the next flight home but I tell him to stay, he will be home soon enough tonight and I would be fine. He told me he loved me and that everything was going to be ok. He seemed lost, scared, and I think that in that moment, the both of us knew that this was going to change everything.

I hear my sister frantically coming in my parents house. I hear my nieces. I felt relieved but scared. I didn’t want to cry in front of them. Then I hear my Dad walk in the door, I knew my mom called him but he was coming from NYC, a solid 50 minutes away and it seems like that was only 30 minutes ago. I then hear my brother and my sister in law.  I came out of their room and walked into the kitchen. They were all gathered around the kitchen counter whispering. I sat down and my Dad disappeared and a minute later came up with a very expensive bottle of wine. Opus One. He said he promised everything was going to be ok, but now, we drink.

There’s Been A Mistake Part 2- Fight or Flight

The fight-or-flight response is a physiological reaction that occurs in response to a perceived harmful event, attack, or threat to survival. Somewhere around my second glass of wine my fight mode kicked in and I had a surge of adrenaline. I told myself and my family that I was not going to let this take me down and I was going to do everything humanly possible to get through. I told them that I was going to explore every available option and I was going to need their support. I knew that time was of the essence and I did not want to waste a second of it. I called the Surgical Oncologist and set up my appointment for 2 days from then. I called my holistic doctor and tried to get answers from a different frame of mind. I called friends that had someone they knew go through this before to get some more perspective. I had questions, so many questions. I was scared and I needed answers. I did research, I was in full fight, adrenaline pumping, mania and I feared that I could not stop. Calls, so many calls. Then I remembered one friend telling me about this super alternative doctor. Well he wasn’t actually a doctor per-say, he was a scientist but he had made claims of curing cancer. I needed him, maybe this nightmare could end if I talked to him. I was desperate. I called him up and was weary but scheduled an appointment for the next day. He gave me hope and maybe at the time, hope is exactly what I needed.

I was back on my phone, doing research, reading message boards, and completely freaking myself out when my phone rang. It was my gynecologist. My stomach dropped. I couldn’t help but feel animosity towards her. How didn’t she catch this? She indirectly did but she didn’t catch this actual cancerous mass. I was half mad half grateful towards her. I was mad that she didn’t find the problematic lump, but grateful that for whatever reason, she sent me for that mammogram. I was in hysterics. She said she received my results and she was terribly sorry but so happy that we caught this. I thought to myself, no you didn’t catch this. How did this even happen? She told me that I was lucky and in a few months from now, we would be dealing with something much more advanced. Huh? How much time would have made a difference? She said, I don’t know, 3-4 months?  I couldn’t speak, I didn’t know how to respond. A flash came through my head. I thought about my birthday 4 months from then. I thought about turning 31 and not knowing I was dying. I thought about my upcoming trip to Italy that summer, a trip that I counted the days down until. A trip that gets me through most shitty days.  A trip that we took the year before that changed me in so many ways.  I thought about being there again, with my family and my boyfriend, creating new memories, making more self discoveries, and having the time of my life,  and not knowing that I was dying. I thought  “would I even have made it to that trip?” I had no answers. I needed answers. I always need answers.

A friend of mine gave me this girls number who had gone through this. She told me that she was diagnosed two months after her wedding, at 27 years old, stage 4, and she is here four years later doing well. It gave me hope. I texted her and she immediately told me to call her. I sat there with my pen and paper, with her on speaker phone and my mom sitting next to me. I was ready to write down EVERYTHING that she said. She gave me hope, she gave me so much hope and she made me feel less anxious. She was living with breast cancer, but she was living. We made plans to meet in two days and I knew from that moment, she was going to be such an important part of my journey. She was going to be my sanity.

Somewhere in the midst of pure chaos, I remembered my boyfriend was due to come home that night. I couldn’t fathom going back to our house. I was traumatized and didn’t want to leave my parents. I needed to be with my family but I needed him there too. After all, he was a major part of our family. He was my family. My brother offered to go pick him up and bring him back to their house. He would have done anything for him and truth be told, I think he couldn’t wait to have him there. He wanted him there as much as I did, he wanted him there for me, he knew that I needed him and I think he needed him too.

I waited in that airport terminal for what felt like hours, I frantically checked the flight status and stood by the escalator waiting for him to come down. I didn’t know what would happen when I saw him, but I knew that I needed to have his arms around me more than anything in the world at that moment. He came down and I ran into his arms and cried, I cried so hard. The adrenaline had left and I was left with so many terrified tears. He held me and told me that everything was going to be ok, and in that moment, it took my fears away. In that moment I felt peace.


Mind Over Matter

I am the type of person that is always thinking about 15 steps ahead of themselves. It’s a gift and a curse. Maybe it’s an effort to be “prepared” but I never actually feel prepared when the time comes. Why do I do this? I never actually realized that I was doing it until I sat down on this particular day in my therapist’s office. The hospital offers free therapy sessions with a social worker, so I figured I would take full advantage of it, but I am also the type of person who loves therapy. It might just be because I love to talk, but talking things out always seems to be the most effective way to process things.  So here I am about three weeks into my diagnosis walking into the social worker’s office for some free therapy fully confident that I would find all the answers, today obviously because I also have no patience.

I am hyper critical when it comes to therapists. It’s hard for me to relate to them, especially in this instance. Unless you have or had breast cancer, how could you possibly understand what I am going through? How could you possibly be able to help me make these critical life decisions? I came with an open mind, though, or at least as open as I could possibly let it be. I find myself continually getting distracted by my surroundings and beating myself up in my head. I think back to the past five or so years in my life and I want to go back to those “simple” problems. Looking back at that day now, I had absolutely no clue how things were going to pan out. I feel so sad for that girl that I was sitting there that day completely lost and confused. I felt like I was drowning and couldn’t come up for air, and sadly that feeling still sometimes catches up to me.

We started talking and I felt myself shutting down. He had me writing out worksheets on how to get to my decision. I was mad, frustrated, and even more upset. No one had my answer. Well how could they, it was MY answer, MY decision and I knew that I would have to make it myself but I just didn’t want to. I was tired and confused. I left that day feeling even more confused than when I walked in. I thought a lot about what he said but was struggling to put all the pieces together. I felt like maybe if my next appointment I sat with a woman, she would understand me a little better.

I went home and got back into work. I had a presentation that night on getting merchandisers set up for their new business: “Getting Set Up For Success.” I usually do a quick once over before I go live with the presentation but that night I was distracted. I pulled it together though and went into my happy place – empowering new women to get their businesses on the road to success. These calls always excite me. I remember myself on them when I first started and I look at where I am today on the other side. As I am going through it I realize that what I am giving them is the tools to get set up, to make those first major decisions to have a successful business. It hits me: that is exactly what I am going through with my doctors. They are giving me all of the information to make my decision on what path is going to lead me to the best life. It is just that I have to decide how to get there and what the best life looks like for me.

After the call I am feeling wiped out and even more frustrated. I take a bath and glance down at my breast. It is still completely black and blue. It looks how it feels. Damaged. I try to rest my mind but it is a struggle. I am tired and I just want to go to bed.  I lay next to my boyfriend and he pulls me in close. I know he feels my pain but doesn’t know what to say. He doesn’t have to say anything. All I want is to shut my mind off and go back to our mundane life of watching The Office in bed before I doze off but instead I lay there stiff and numb. My mind is going a million miles a minute and then it stops. It ramps up to super speed and then I go numb again. I have knots in my stomach, yet I am losing my ability to feel emotion. I am tormenting myself with every possible scenario and outcome. I think about what it would be like if I died. Am I going to die? I don’t want to die. I am not going to die. How did I get here?


It’s OK to not be OK


It has been so long since I have posted. It is frustrating that I still have had such a fear of acceptance and approval over sharing MY personal journey.  The amount of amazing messages and comments I have received from this blog have meant more to me than I can put into words, but the negative feedback sometimes hinders my ability to share. I never wanted people to think I wasn’t strong enough to persevere.  I will admit, after all that I have been through, I still fear that there are people rolling their eyes out there.  In fact, I think that my fear has only grown since taking a break from writing. I have a pretty large fear of rejection and how can I really blame myself. It was a year full of abandonment of every kind. I lost major parts of myself that honestly were my entire life.  These were the very things that defined who I was. My health, my body, my relationship, my home, my family, and my career. My mortality, the life I had created for myself, loved ones, and my passion had all been ripped away from me at 30 years old. When I first started writing I think I was still running on adrenaline but naturally, that all came to a halt. I don’t want to pretend that I have it all together and my life is perfect. It is far from perfect but there are so many beautiful parts of my life that keep me going, maybe not always at full speed, but keep be upright nonetheless and help me to strive for the best. I literally had to recreate my path of life. I didn’t just go through a break-up, I didn’t just lose my job, and I didn’t just battle through breast cancer, three major surgeries, and all the ugly pain that came with it. I had to battle everything, one after another, and on top of each other, in addition to a whole lot more.

Something that I can honestly say, never judge someones struggle. It might not be the struggle you know or have endured, but it is their struggle, their pain.  Maybe you can not relate and maybe it doesn’t seem that bad, but to someone it is everything. It might consume them to a point that you can never understand. Some of us are stronger than others, and that is OK. Over the course of our lives, our strength will change and adjust to the situations we go through. Sometimes, not right away and we find ourselves hurting beyond measure until we can muster up that strength to get through and then sometimes that strength disappears and we are left trying to keep our heads above water until we can get it back, if it comes back. I went through most of my breast cancer journey on adrenaline. I had strength that I didn’t realize was inside of me, but it came when needed. Not everyday was like that though. Sometimes I found and still find myself so low but never wanted to share that part. To be honest, I got through and still get through some of what feels like my darkest days because of the support I have around me. The people in my life made it not just bearable, but surprisingly pleasant.  They made me smile when I didn’t want to or even think I can. They sat in the hospital with me when I really just wanted to be alone.  They stayed up all night with me when I couldn’t pick myself up off the floor because my heart was so badly broken after completely losing myself. Thank God I was never alone though. Even after everything that has happened, I sit here today still quite broken. Something that I learned, the pain doesn’t just go away. It get’s less and a bit easier over time but the scars will remain. I am blessed with so much but what I have had to suffer through still haunts me. I have physical and mental pain that I deal with daily and that had to become my new normal. I suppressed so much with that much needed strength but no one, and I mean no one, could possibly get through it all unscathed. I am a feeler. I don’t like to brush my feelings under the rug. I need to feel, go through, and accept.  I have accepted that it is ok to not be fine. It is ok to not have it all together. It is ok to take time for yourself, for your soul, for your heart. The journey really is never over.

I said it before, but I often don’t want to follow through with my blog. It can be painful, and hard to share but I just took a huge hiatus, and it didn’t feel right. I am constantly and continuously sharing my story to people I meet and cross paths with and every time that I do, I am reminded why I am supposed to be sharing. That even if this helps just one person, it is worth it. I have been working on a very intimate project that I look forward to sharing one day  when the time is right but until then, I will continue to share my story here.  Thank you, thank you for following along my journey and making me feel a little less alone with your shared stories and feedback. Please keep reaching out to me. How we continue to overcome is important. We may never be 100%, but is anyone really? We all have this awful fear of appearing like we don’t have it together and maybe even convincing ourselves that we need to or there is something wrong with us. Social media may make it seem that way by only showing the good stuff but I think that it is important to share it ALL and I plan to do that because just like the name of my blog, It’s Always Something. It isn’t always terrible, but I doubt anyone can say that there life is flawless. Embrace the ugly and don’t fear the vulnerability. No one has it all together.  It’s ok to not be OK.  You are not alone.





Keeping it “Together”

I have another sleepless night. Having cancer has completely consumed me. Its even consuming my dreams. I literally can not escape it. Most days are spent at the hospital seeing doctor after doctor. When I am not at the hospital I am home with mental torment about what treatment plan is going to give me the best life possible. My phone continually rings from doctors, social workers, breast nurse navigators, concerned friends and family.  I feel trapped and scared and just want a break. I want to be able to think about absolutely anything other than this. I look forward to the weekends so that I don’t need to be seeing doctors, so I am not being bothered by work, and that my phone stops ringing so that I can at least try to get a break. Sadly, these moments are few and far between. Why won’t everyone leave me alone. Don’t they get what I am going through? Why is everything overcomplicated. I get bombarded with new information, new tests, different doctors I need to see, social worker nonsense, pressure on which doctors I will choose and which treatment plan I want to go through with, and I am supposed to maintain all of my job duties at work, be the perfect partner to my boyfriend, listen to my friends problems, and be a present member of my family. I go through the motions but it just doesn’t seem natural.

I have my boyfriend’s grandmother’s birthday dinner tonight. I will have to pull it together and put on a smile so that no one questions my emotions. I hate socializing when I feel like this. I pride myself on being a genuine person and smiling just doesn’t feel genuine. I keep struggling to put together any sense of normalcy and I feel the need to escape. I find myself hiding upstairs to keep away because the sadness, fear, and anxiety have overcome me. I have trouble communicating but I knew that me hiding was only going to make my boyfriend sad and nervous. I come down and pour a glass of wine and open up to his family a little bit about what I am going through and how clearly bent out of shape I am about it. The problem is, talking about it is only making it worse and I can barely see straight. Once again my frustration is twisting me up. How can anyone possibly understand what I am going through or how I am feeling? My life is the furthest from “normal” right now and I would give anything to snap my fingers and have it all back. I would give anything to have my old problems be my biggest problems. Somehow stress at work, nothing to watch on TV, not enough hours in the day to focus on stupid meaningless things, not being able to find a parking spot, being tired, feeling fat, all feel like bullshit. How did I ever stress out about those things?

I find myself getting mad at the people around me because they don’t get it. I am starting to feel less and less like myself and I know that I can’t keep doing this on my own anymore. I want answers, I need guidance, I need support. I know that it is time to utilize my 12 free therapy sessions at the hospital but I am stubborn and all I really want is for someone to make the treatment plan decisions for me. I feel like retracting but I know that will do me no good. The only person that I know understands my struggle and pain is Erica and I feel a sense of solace when I can vent to her but I don’t want to bombard her with my issues everyday. She has her own battle and sometimes I feel silly complaining. My family is so supportive and even though they don’t get how I feel, they try and give me total love and support and for this I am grateful. My sister in law has created a team in my honor for a breast cancer run that she does every year. I didn’t know if I would ever publicize my struggle but this seems like the perfect way to do it. If I could help raise money for families in need that maybe don’t have the same support that I do or maybe don’t have medical insurance, than that would make me feel like I was helping make a difference. I was so fortunate to have everything that I needed in this process. I think about how lucky I am again and feel a strong duty to help others. I start to draft a Facebook status. It feels awkward as I type the words and I still can’t believe it is reality. “You never think it will happen to you but the reality of it is, it can and it has…”


Do Genetics Play a Part?

Getting diagnosed with breast cancer at age 30 made me think I definitely had a genetic predisposition to this happening. Why else would this be happening? Every time I tell someone they ask me if I am BRCA positive. I had no idea the amount of genes that could contribute to making you sick,  and I also had no idea that 90-95% of breast cancer was not in fact from any genetic mutation. It was a long day of appointments and I was ending my day with the genetic counselor. I had no idea what to expect but was told it would take quite a few hours. My Father, Mother, and BF came with me and we were put in a very small room with no windows. Hmm, claustrophobia sets in. I get handed a PACKET full of papers and a very nice women comes in and starts to explain the process.  She pulls out a piece of paper and a pen and starts to draw out a family tree. After hours of firing questions about every family member I could possibly be related to the tree finished and looked more like a forrest. She then started to discuss all the possible genetic mutations that could be running in my family. Exciting. She handed me over a paper with four that seemed to make the most sense, BRCA1, BRCA2, PALB2, TP53. To be honest, I had only ever been familiar with the BRCA gene and since being diagnosed its all I have heard from people. “Are you BRCA positive, are you BRCA positive?” I don’t fucking know! She is explaining the BRCA gene and I start to panic, this would significantly effect my nieces, my cousins, and then I see that it not only causes breast and ovarian cancer, it causes prostate and skin cancer so would also effect my brother and nephews. My head is spinning and for some reason I feel responsible. What if I have it, I have to explain to my entire family that they are at risk. I have to install that fear into their lives, their parents lives, and create a sense of terror in my entire family. I sit there and think, why, why can’t we just go back to how things were a month ago, before any of this was happening, when my biggest problem seems so minuscule now. Perspective. I feel frustrated.

The lady then starts to explain the next gene, PALB2, and associated cancers with that one and another panic attack sets in. These percentages seem high and once again I have never felt less invincible. Lastly, she brings up TP53. She explains the severity of this one. All I hear is 90% chance of developing an aggressive cancer and multiple thereafter in your lifetime.  My mind goes white. I think back to my friend Erica that I had just met. I remember her saying that is what she has. I hear my dad chime in and say NO, we won’t be doing that, that is like saying there is a 90% chance you are going to get hit by a bus, we aren’t sure when but its most likely going to happen. He said that he didn’t want me to have that extreme worry stay with me for the rest of my life.  My mind stays on Erica and my legs go numb. I want to cry but I am frozen. I want to scream at the top of my lungs. The small room that we are all in seems to be getting smaller and I need to get the fuck out. I sign off on the 3 genetic tests and get escorted into a room for bloodwork. More bloodwork. I am sick of getting poked multiple times a day for blood and other things. They said they could collect a saliva sample but my parents urge me to get the bloodwork, that seems more efficient. They explain that these results will be expedited since they will help me with my treatment plan. I go into the bathroom and for a second my eyes well up with tears. My frustration turns into physical pain. For the first time in my life, I feel completely vulnerable. Stripped of all my armor and left here completely helpless with now way out. A shot of adrenaline pumps through me and I snap out of it. I have more surgeons to see and I have to still meet with my medical oncologist, more tests to lead me to a treatment plan that I will have to decide on and then endure and I absolutely can not crumble. What good am I if I fall apart?

Sporadic, Familial, Hereditary Breast Cancer Breakdown pie chart

The Process of Falling Apart

It’s been a while since I have written. I have gone back and forth about doing this blog at all. Sometimes it hurts so much to dig into my past and feel all of those painful feelings and feelings of terror all over again. Every time I choose to stop, something happens that puts me back in this direction all over again. Today’s post has been something I have avoided for a while. I know a breast MRI doesn’t seem like the end of the world to most, but it was by far one of the worst days of my life thus far. It had been two long weeks of spiraling out and feeling like I was drowning when I had to go in for a breast MRI. I was worried but not more than usual.

My mother and I arrived early and got checked in. Another series of way too much paperwork and panic. I tried to wrap my head around what was going on and they called my name. I went back and changed and they allowed my mother to come into the changing waiting room with me. We were uneasy but anxious for this imperative testing to be over. I was called back and briefed on what they would be doing. The tech was sweet and clearly pregnant. I have a flashback to my mammogram and the sweet pregnant tech that day. I remember a tinge of jealousy and it hits me again. She is about to start a life with her husband and her new child and I am here for another miserable day of tests and doctors because I have breast cancer. I had an appointment with a fertility doctor the next week about saving my eggs so that maybe one day I could have that same joy but a part of me just knew that might not even be an option. It made me sad, really sad but I quick snapped out of it and was ready to get this thing over with. They noticed my Tiffany bracelet, which was a gift from my Aunt Angela on my 15th birthday,  was still on. I never took this off. She died shortly after giving this to me from cancer and it was my piece of her that was with me all the time. She was my God Mother and we had a special bond. I couldn’t help but wonder what it would be like if she was here and now I was sick over having to take this off. They let me run it out to my mom and as I saw her, I knew that this was going to throw me off.  She had been keeping it together while she was with me, but I think seeing me unexpectedly threw the both of us off. I could tell how distraught she was and my strength was immediately depleted.  I was mentally prepared once I walked in the first time but now I have to start over.

They inserted an IV into my arm, I was told there would be something injected into my veins at some point during the test. I glanced at the incredibly tiny hole of the massive MRI machine that I knew that I would be sucked into and terror literally filled my body. I was laid face down on this weird MRI table, both of my breasts were tightly squeezed and secured in this plastic device. I was told to not move a muscle. HOW? The machine started to reel me into that hole and being face down I could only see the floor and everything started to go black. It’s happening, a full blown panic attack. I started to scream, get me out, stop, stop, stop, get me out. They got me out and released my breasts. I sat up and tried to catch my breath. “I can’t do this!” The tech was sweet and convinced me that it would be over before I knew it and we had to do this. I had no option. They needed to see if I had additional tumors and this was the only way. I was secured back into the table and took a few deep breaths and questioned why I didn’t take the fucking xanax I was originally offered. Stupid.

The machine started to roll back and bring me into that hole and every event of the past two weeks bombarded my mind. The reality that I have cancer and I am laying here, against my will, to determine just how sick I am overcame me. I am going to throw up. “STOP! STOP! PLEASE! GET ME OUT!” They rolled me out again. They told me this test needed to get done but if I really couldn’t do it, they would reschedule. As a procrastinator that sounded like a great idea but I knew that was the wrong idea. I needed these answers ASAP. I knew that my doctors wouldn’t have the results that they needed and I would just delay my treatment. I needed to pull my shit together but I couldn’t. I just wanted to give up. I had nothing left in me, literally nothing. I cried for my mom and they agreed to go get her. I didn’t want to upset her but I couldn’t do this and I needed her. I have always been a mommy’s girl and whenever I was sick I wanted my mom. She always somehow made things better. She came back and gave me a pep talk but this time, nothing was making it better. She asked the tech if she could stay with me and they said legally she couldn’t and that it was dangerous for her to be in that room. I told her to go, I would be fine, I didn’t need her exposing herself to anything harmful. She demanded that they let her and she would sign whatever waiver they needed her to. They agreed and got her prepped to be in the room. A tiny sense of relief came over me. They strapped me back in and kept asking me to stay still, I couldn’t stop crying though. I needed to get it together. She stood by my head and told me she was going to be there and wouldn’t stop talking to me.

I was rolling back into the tube and knew this was it. I had to get through the next hour of my life in here and then this was it. It would be over but then what though? I would have more answers but it could be worse than they originally thought and then what? There is no light at the end of the tunnel right now. I felt zero hope and 100% terror. She started talking to me about Italy. About our trip last year and how we would be there again this summer all together. My whole family and my boyfriend. We would be drinking wine and… BAM BANG BAM holy shit that is loud. They warned me of the loud sound but what the actual fuck. It vibrated through my whole body and made me feel 100 times worse. I could hear her trying to scream over the bangs but it was like I was in a war zone but the war was in my body and my mind and I pictured my body vs the cancer growing in my body and I just cried. I heard my mom crying as she tried to keep talking over the loud noise. I wanted to die in that moment.

The sound stopped. Phew I hear my mom and her voice is shaky. I hear the tech saying another series is coming and I am doing great. Great? I am actually falling the fuck apart but ok, we can call this great. My mom is talking about our trip again and the food we are going to eat and the incredibly loud noise starts again. This time I feel like I am in hell. Like what I would imagine hell to be like. It sounds like I am in the worst night club strung out on drugs wishing I could just be anywhere but there. I felt like I was being tortured. I sob but try to stay still. They inject me with something and now nausea fills my body. I keep counting in my head to a hundred wondering when it will be the last time. How much time? How much time? How am I going to make it through. My breasts are aching and my body is in pain. I need to move. I need to get the fuck out of here. I need to be ok. I need to not be dying. My mom doesn’t stop talking and it is basically just all muffled.  I couldn’t tell you what she was saying but I knew she was there.  I knew she was there the whole time and it got me through somehow.

No one will ever really understand what her and I went through that day and maybe it wasn’t the actual MRI itself, but in that moment, we both fell apart. We fell apart and broke down the day I was diagnosed but this was different. The reality of the situation hit us at once and we had not our first, but second mental breakdown together and surely it wouldn’t be the last.

This picture was taken right after. We look so happy and just looking at it you wouldn’t have any idea what we just endured. I heard through it all how strong I was, how positive I kept everything. Although most every day I kept a smile on my face and powered through with whatever strength that I could muster up and ran on pure adrenaline, I was dying on the inside.  It’s a good reminder that you have no idea what people are facing internally. How they are portraying themselves in person, through pictures + social media can be very deceiving but perception becomes reality.



Information Overload

I woke up on this Thursday sick to my stomach. I had a full day of doctors starting with the first plastic surgeon I would see. It would be the first appointment where my bf could not make it so the day started off feeling a little incomplete.

It was a cold, windy day so I took an uber down to my parents hotel which was conveniently located by the hospital we would be going to. I remember ordering a cappuccino and a bagel. Normally I didn’t eat carbs like that often but when I was diagnosed, I completely stopped giving a fuck about anything like that. How could I care?

We walked into the office we were going to and it made me somewhat uncomfortable that I was in a plastic surgeons office about to discuss my breasts. Sure, I had thought about getting a breast reduction in the past but this was not that. I was not there electively and I was not happy about it. They handed me over a pamphlet of options which made me feel uncomfortable. It was a different protocol then the elective stuff. I got a little anxious thinking about what the potential cost of this would be. They couldn’t charge me right? This was not my choice. I knew that I DID NOT want breast implants. The idea just seemed ridiculous.

I filled out what felt like 83 pages of paper work and waited for my name to be called. I couldn’t sit still so I paced around the waiting room, noticing every detail around me and feeling like I did not belong there. They called me back and my Dad decided to stay behind until I had been examined. My Mom came back with me and I met with the NP. She was sweet, made me feel comfortable and told me that the Surgeon I was about to see is the best of the best. I feel like that became a trend with every PA or NP that I saw. I said, of course you think he is the best, you work for him! She smiled and said, “he is fantastic, but I know that you can’t go wrong in this city with some of the best hospitals at your fingertips.” I thought about it and felt so lucky. How lucky was I that I had all of these options. It made the fear subside just for a little  until the surgeon came in.

He was charismatic, nonchalant, and got down to the point. He examined me and took some photos and told me what my options were. I could get a lumpectomy and because of the decent chunk of tissue that would need to be removed, he would do a reduction as well to even things out. I had plenty to spare so that seemed like a no brainer. But this came along with a decent amount of treatment and a much higher recurrence rate that I wanted no parts of. Then he got into the mastectomy. It made me cringe. There were two options. They could replace my breasts with implants (NO THANKS) or they could do something where they took tissue from my abdomen and performed a micro surgery which would take about 10 hours. They would take my tissue, skin, and blood vessels and transplant that up to create breasts (NO THANKS.) It made my head spin. He told me that I would struggle carrying a baby if we did that option since I would be sliced in half then sowed back together rather tightly with little to no room for my belly to ever stretch (NO FUCKING THANKS.) I looked up at him with a completely stunned look mixed with tears in my eyes and asked if there was another option. I knew what the answer was. My Dad asked how much this would all cost. He smirked and said that this was beyond my control and insurance would cover any option that I went with. Ok, first bit of good news I heard yet.

I sat there and looked at the lesser of two evils. I suppose I am either getting breast implants or doing the breast reduction lumpectomy option but with that came a whole lot more treatment according to the previous Surgical Oncologist. I knew I was seeing a 2nd Surgical Oncologist at a rivaling hospital right after so I would wait to see what she said.

We left and decided we all needed air and something to eat. I needed to call my bf and fill him in too. He was already on his way back down to the city to meet us for the remaining appointments that day. We went to lunch and talked everything over. I couldn’t think straight.

I arrived at the other hospital and checked into the Breast Cancer Center. This is where my friend Erica comes for treatment so I felt like I was in good hands. I was about to see the Surgical Oncologist that was referred to me by the head of the board there. My Dad had pulled his strings and we were confident that this would be the Surgeon I would go with. They took me back before my bf had a chance to get there. I was anxious and really needed him there. I heard his voice as I waited in the room and immediately felt a sense of relief. I needed my A team with me so that we could make the final decision together.

I was ready to hear what this doctor would tell me and hoped that she had all the answers I was looking for. I hoped that she would have some groundbreaking option that no one told me about yet where I could magically make this all go away pain free. Maybe she would tell me that the other hospital made a mistake and I was really ok. Or, she would just tell me the same things I have been hearing with the same direction the previous surgeon had told me leaving me empty and confused. What I really wanted was for someone to just make this decision for me. I wanted someone to tell me what to do because how could I decide?

She came in and was young, like almost too young and had a tacky necklace on. It bothered me. I don’t know if it was because I worked for a jewelry company and that I had a keen eye for it or if i was just being super critical because I was extremely uncomfortable and annoyed and just looking for reasons to dislike her.  I tried to get passed her age and her taste in jewelry and reminded myself that she was referred to me by the board of the Breast Cancer Center so she must have done something right! Gosh why am I being a bitch, cut the shit Janine!

Alright, alright I am listening to every word she is saying and she gives me those same options. Please for the love of God tell me what to do lady. I tell her I just met with a plastic surgeon and he recommended I get implants and not the abdominal surgery and she strongly disagrees. Her recommendation is mastectomy with a flap (the only option the previous doctor was against. awesome) but then circles back to the lumpectomy option with the 12 weeks of radiation every single day and 5-10 years of Hormone Therapy which would shut my body down into menopause.

This was a nightmare. This was an actual nightmare and I felt like I was in a hole and the only way to get out was to be extremely damaged along the way and hope for the best and never truly being out of the woods with recurrence percentages no matter which way I went. Please tell me this isn’t happening.  There was no easy choice, they all sucked and now I have two contradictory options from two different top surgeons. How the hell will I ever figure out what to do and how the fuck do I wake up from this nightmare.

I’m Not Fine

My parents came to town the night before an extremely long day of doctors appointments. I would see my first plastic surgeon in the morning and then head down to a new surgical oncologist, then see a genetic oncologist counselor for a rather long science experiment sounding appointment.  Following along with our new tradition, my parents, my bf, and I went to a big, expensive wine filled dinner to ease our anxieties about the following day. The four of us had always had a special bond since we were the only couple in the family without children and often did things together but these dinners started to become a special tradition that I knew I would never forget. A lot of laughter, but a lot of anxiety, and never complete without some tears. There was just so much unknown.

We would joke about things and try to have some sense of normalcy but our attention would just be drawn back to the elephant in the room. The fear in my parents made me sick. Their daughter was dealing with something they had no control over yet I know felt somewhat responsible for. The fear from my bf was different. He seemed to feel helpless and concerned and as if he had a million things running through his head whenever he looked at me that made me feel helpless right back. I needed to be strong though. I needed to be strong for them and let them know that I was fine, that I had a positive attitude and certain that everything would be fine. I’m fine, I’m fine. Maybe if I keep telling everyone that, I would start to believe it.

We went back to the hotel that my parents were staying at and there was definitely some extra nerves between us all. Every time we saw new doctors was scary but what would the geneticist reveal? What were we really dealing with as far as mastectomy vs lumpectomy, and would this new surgical oncologist have different opinions or findings. We ordered another bottle of wine and sat in the lobby for a while and I noticed that we were all starting to fall apart. I kept popping Tylenol because I felt physically ill from the anxiety with the hopes that it would alleviate something. I needed some type of relief and truth be told I had no idea how to do that.  It was a type of feeling that you really didn’t know how to make better. Everything hurt both physically and mentally. The anxiety was crippling and I felt like I was on a roller coaster that didn’t stop. Inside I was screaming, “stop the ride, stop the ride,” but that wasn’t an option. I needed air. I needed to clear my head.

My bf and I decided we would walk home and try to ease our nerves. It was a late Wednesday night and we didn’t anticipate running into anyone we knew. In the midst of a dual panic attack we bumped into a friend of ours. A friend that had no clue what was going on in our world at the time. We started to make small talk but before I knew it, I burst into tears and had a case of the cancer word vomit. “I have breast cancer.” It was near impossible to have a normal conversation with anyone because I was completely consumed. All of the stress, anxiety, and pain from that night came to a head right there in the middle of Spruce Street. I couldn’t fake it anymore. I am pretty confident that I traumatized him that night and continued to do so as I ran into people along my journey but the thing is, I didn’t care in those moments. All of that trying to assure everyone else that I was fine just stopped. I was not fine.



A Lot Can Happen In A Week

It had been a week since that dreaded diagnosis call. A week where my entire life had been completely thrown upside down an thrown in a total whirlwind. It felt like a year had gone by. I couldn’t remember life pre C.

When I was diagnosed, my work graciously told me to take as much time as I needed. I craved normalcy so I was set to return this Monday morning. I woke up that morning and remembered how innocent I was the week prior. How I woke thinking I was healthy and had NO idea what kind of call I was about to get and how my world as I knew it was about to change. It made me shudder.

I woke up on this morning February 15, 2016 ready to get back to work when my phone rang. I noticed the number was from my doctors office and for a second I had a flashback of the week prior. I answered, it was my GP on the other end. “Hi Janine, I don’t know how to say this but there was an issue with your tests, with everything going on, we are going to need you to come in for a colposcopy to rule out cervical cancer.” I collapse again. “What? I thought you said everything looked normal?” “We thought it did but the lab just sent us these official results and it looks like theres abnormality.”

Now I know abnormal results are fairly common but not today. Not when a week prior I was diagnosed with Breast Cancer. Cancer, something that spreads. This new bit of information sent me spiraling. Had my cancer spread? Unable to breathe, I called my Mom. I was still there from the weekend and she had just left to go to the gym. She started to scream in a panic and turned around. She came home and called my dad, more panic. I felt like I was in the twilight zone and was having flashbacks to the previous Monday.

I called my boss and let her know that I would need some more time. Another completely unexpected phone call has thrown me entirely off course. I couldn’t wrap my head around everything that was coming in. I wanted to be sure that I was processing because as a psych major, I know the importance of processing information so that it doesn’t get stashed away somewhere and then come out to haunt you.  This was just too much to process. I would be ok right? I couldn’t possibly be dying?

I hadn’t yet met with an oncologist so I didn’t know who to call. I called my surgical oncologist and they were concerned but had no answers. I call my holistic doctor and he tells me that it wouldn’t necessarily make sense that it would spread to my cervix or vice versa but he didn’t have the answers. either.

How is this happening? Nothing made sense anymore. I have never felt less invincible. I felt like a ticking time bomb with no answers. I wanted to remain strong and put together for my family and my boyfriend. I didn’t want them to understand the fear in my mind. I had to put on a brave face because I didn’t need them to worry. It was exhausting though. I could barely see straight. I needed to get through this week of doctors appointments and the dreaded MRI. I knew that would give us more answers and to be quite honest, I wasn’t sure I was quite ready for them.