(a MRI scan from the past 6 months. It seems they have found a need to scan my abdomen my wrist, my Brian, and my spine, but not the most important)
As promised, I have addressed the silence and I am opening the door back up. Here is a little glimpse into what has been going on in my world. A few months ago I shared that I had reached the 2 year anniversary of the day I started chemo. Although it was a VERY busy day at work, I was taken back to that pivotal moment in my journey with breast cancer more times than I can count. I was hopeful to be on the other side of things, and very grateful to finally be getting a little bit of my pre-cancer life back. However if you have ever faced cancer you know that it doesn’t take much to rip each and every hopeful thought out of your mind and replace it with doubt, sadness, and fear. Shortly after posting on my cancerversary, I unintentionally ran my fingers across my breast area as I so often do without even giving it a second thought now. After having breast cancer you do not have to put a self breast exam reminder on your calendar as the thought crosses your mind every single day there after. But this time something was different, my fingers came to a screeching halt and stopped quickly at the edge of a lump I hadn’t yet felt. My world stopped. I could feel the heat or fiery burn of an anxiety-induced hot flash rushing up from my legs and arms and filling my body. All of a sudden, my mind started racing and filled with fear. My very first thought was, my cancer is back, and then the cycle started. Everyone cancer patient faces the reality that their cancer could return at any moment, and move to other parts of the body. In a way, I have actually made peace with what I cannot control and I have whole-heartedly promised that if my cancer does come back, I will again fight with everything I have in me. However that peace is still not preparation for your worst fear unfolding in front of you.
For me, my life has just started to normalize as I am finally back to work, I am just now getting compliments on the hairstyle that I didn’t choose, and have even started wearing my converted head scarfs as neck scarfs again. I have gotten used to being the .1% in that if something can go wrong it typically does with me, but I have stayed hopeful that my treatments worked and my cancer is gone forever. Although my inner optimism was trying to take control, the lump felt hard, it didn’t really move much, and it did not hurt which I know are all symptoms of a malignant breast mass. To make matters worse, the lump was in the exact same location as the very lump I found two years ago. I looked for any rationale I could find for the lump, but my mind was already spiraling out of control. I thought about how awful the treatments were on my body the first time around and worried that I wouldn’t be able to keep up the pace I have been working at in my personal life, with my advocacy, and with my work schedule. I worried about the fact that if my cancer had returned there is an even grater chance that it has moved even further than the lymph nodes and how at this stage oncologists no longer entertain the word cure. In an instant my mind again shifted gears and halted as I realized that I still have not had the breast MRI that my oncologist has been ordering to confirm that my treatments worked in the first place because my insurance is denying me. I again saw the faces of 3 different Radiologists saying “ you really need to get an MRI, because that is the only way we will be able to see the chest wall to confirm that the treatments killed the cancer cells that were left after your bilateral mastectomy”. Did the chemo and the radiation treatments work? Did the fact that my chemotherapy regimen had to be dose reduced by 20% make the treatments ineffective? After all, I was only able to receive 80% of the cancer killing drugs that are known to kill my form of cancer. And the obvious thought of having positive margins after surgery push it over the edge. My greatest fears were already coming to life in my mind. The dose-reduced chemotherapy regimen was no match for the cancer that was left after my Mastectomy and it really had been growing in my body ever since. Have I really been walking around with cancer in my body all this time? My heart was racing and my mind was spinning out of control. I thought about the conversation that I had with my nurse a few weeks back in sharing a dream that I had where I realized that the people who make the biggest difference in the world, do so because they ultimately die trying. I remember the goosebumps running up my neck when I actually muttered the words, “Seay, what if I am meant to bring my cause to the forefront of people’s minds, but I am meant to loose my life in the process to serve as an example. I remembered that I told her I was at peace with what I could not control and I have already committed myself to a cause that choose me but, and at the same time I am not ready. I will never be ready. Before I knew it all I could focus on was the words that John and Cindy, two friends who were taken by cancer, said to me in their final days…. “I am not ready to die, there is still so much more I want to see and do”. That thought. That truth. That has been my biggest and greatest fear since I heard the dreadful words. Having no choice in the matter and knowing that you will be taken is a terrible thought. Accepting that my greatest fear could someday become my reality has been the hardest aspect of healing through breast cancer.
I experienced the jealousy phases that I hate to feel because I don’t ever want someone to feel guilty for having a normal life.For me, I fixate on things I worry I will not get the opportunity to do. I thought about the dreams that are on the minds of every person I see on a daily basis. How so many around me are thinking about adding a beautiful baby to their growing families, planning their summer vacations, planning remodels of their homes, or even venting about any normal schedule issue with their children. Although I would never want anyone in my life to feel bad for having a normal day to day life, or even for having these normal daily worries, I would give anything to have those types of worries again.. I would give anything to be able to plan beyond tomorrow, but instead I was planning for a world without me in it…. again. By this time I had broken the news to my husband and we were both sliding down the very slippery slope of doubt, and trying to cling to any shread of hope we could find. We agreed that we couldn’t get to far down this path without at least talking to someone, so we decided I had to bring it up with my nurse while at infusion the following day.
As I walked in, Seay greeted me with a big smile and one of her ever-so-comforting hugs. We made small talk by discussing each other’s weeks and how it seems that we never see each other anymore with all the changes that are happening in the infusion center and then the focus shifted to me. She leaned on the cabinet and calmly said… “so how are you feeling?”. I didn’t even bother with a response. I simply said I have something for you to feel, as I reached for the lump in my chest. She very quickly said… Tam it’s probably nothing don’t worry…. and then she reached forward and asked if she could feel it. As soon as her fingers hit my skin, I could feel the air get thicker. I then watched the smile quickly fade from her face. She looked up at me and said, “have you told anyone about this? I really do not like what I am feeling”. My eyes began to fill with tears instantly as I didn’t like how it felt either…. To be. honest It feels the exact same as the first lump I found 2 years ago.” She said in a very calm, but stern voice….. “ Tam you cannot mess around with this, I think you need to call Dr. Melnik’s office right now”. I could feel my heart sinking into the pit of my stomach as she pointed to my phone. I called right away and was able to get an appointment.
If you are someone who has faced cancer of any kind you know the torture we have been facing. You know the mental process that has been running laps in my mind. You understand that I have been reliving each and every scary and dreadful moment of the past few years. I have been thinking about all the things I haven’t done, all the things I still want to do with my baby girl, and all of the things I will not be able to experience with my family if cancer takes me from this world. You know the heartache I felt when I woke up to a facebook post the following day that made my greatest fears a HUGE reality. A young women who was the same age as me, and was diagnosed with breast cancer a few months after I was, had passed away the very next morning. She left her young husband and her two year old behind. The reminder that I could die from this, again set in.
Although we have made great strides in the fight against breast cancer. Women are still dying from from this disease, in fact the women are getting younger and younger. Breast cancer is not all pink ribbons and bows for those who live it. Breast cancer ruins and takes lives. The depression was beginning to set in. I thought about the cards I wrote to Corryn in the weeks of my diagnosis for Jordan to give her on each of the birthdays I wouldn’t be here for, cards that I wanted him to give her for her first crush and her wedding, and how I again had the feeling he would be passing those cards on to her, not me. I have been planning for every scary moment that may be in my future, and worst of all I have again been planning how we would tell Corryn that her mommy is going to die. I have been trying to figure out how you even explain death to a 4 year old if it comes to that and to be honest I almost see it in my mind. How could I not. I have been envisioning my eyes closing for the very last time, and my sweet girl trying to wake me up. I see my husband sobbing as he tries to explain that mommy cannot wake up anymore because she couldn’t fight the cancer anymore. I have been thinking about the fact that I have already missed so much with Corryn over the past two years because of cancer, and now my time could be limited even more. I have been thinking of my cause with forgotten fighters and how it still has not gotten off the ground in the ways that I wanted it too and it had not yet made the impact I want it to make. I thought about the fact that although I have established that I do in deed have a voice, I have realized that I know how to use it, and I am not afraid of the mission, I still have a lot of work to do with this cause before I leave this world. I thought about the amazing amount of debt that I have accrued in medical and living expenses over the past two years and how I do NOT want to leave my family with a burden of debt when I pass on. I thought about my funeral, the location, the songs I want played, and the plans I have made. I thought about Jordan and what his life would look like without me in it. Would he be able to put aside his own sadness and pain, in order to keep a strong front for Corryn? Would he be able to remarry, and if he did would he keep my memory alive for Corryn? Would she know how much I love her? I thought about the conversation I had with 4 key women early on in my diagnosis and how I made each of these women promise that if my cancer took me, they would stand in for me in helping Jordan raise a selfless, kind, caring, compassionate and driven young women. I talked with Jordan about how he didn’t think he could ever leave our home if I passed away because of all of the memories we had as a family while we lived in this home. We talked about the decisions we would have to make if my cancer was really back, and how he could better support me emotionally through round two, how I really wanted to get our “us” back while we have time left. We talked about everything, we planned everything, and we cried…. A lot. We have had a LOT scares since I finished my treatment and every single one of them has been down right torture, but this one has topped the charts in the reality department because it was confirmed with the fear I saw all over my nurse’s face. In our world it was already real.
The following morning I was up bright and early for my first appointment. I was heading strait to infusion, and then leaving early to head out to my oncologists office. Jordan right away said that he wanted to be with me at Lemmon-Holten because he did not want me to get this news without him again, but I quickly assured him that I would be just fine on my own. In fact, I felt that it would be easier on me if I was alone. I know it sounds crazy, but it is easier for me to face what is scary and sad if I do it alone. I knew if Jordan was with me, I would have been reassuring him that I was ok, and putting on my strongest game for him, while trying to keep it together on the inside. That is harder to me. That is scarier. So I went alone. From the moment I woke up, I had my emotions in check just as I did on the day I was first tested and diagnosed. I was calm, I was optimistic, and I was determined that no matter what happened, I would be ok. I found comfort in the fact that I got to see my nurse Seay before my scary appointment. However as I was lead to my infusion area something felt different. There was a different sort of buzz in the air. Before I knew it a brand new nurse walked up with my fluids and meds in hand. She happily greeted me and explained that she had just started and that she would be my nurse today. As she started asking me how I was feeling the tears again flooded my eyes. I am always in support of people learning or growing from my medical craziness, however Today WAS NOT a good day to have a new nurse. She asked how I was feeling. I said I was doing fine as I forced back the tears while gazing out the window. I couldn’t elaborate on how I was really feeling because I knew I couldn’t keep it together if I did. She asked if I was feeling fatigue and how my nausea was, but nothing she said was registering in my mind. All I could see was that my day was already not going as planned. Today of days, I needed my security. I needed a familiar support system. I needed my nurse. For the next few hours I fought to hide the tears that continued to stream down my face. I found it hard to focus on the work I brought wth me to my hospital cubical, and I apparently I found it hard to hide what I was feeling because one of the other nurses walked up to me and said, “you’re struggling today aren’t you?” I replied with yes, can you tell? She said “Tammy, you are always so strong. You always come in here with a smile on your face for all of us. It is ok for you to have a day like this. It is ok for you to feel this, you can let yourself cry sometimes.” My walls came crashing down and the tears began to flow. Full fledge ugly crying right there in the infusion area. She wrapped her arms around me, and told me, that she was sorry, and that I was going to be ok not knowing what was actually going on. Within a few minutes Seay walked up as I think she may have sensed what was going on, or maybe Jen had let her know. Knowing the emotions that were filling my mind from our last conversation, she didn’t have to say anything. Tears were seamlessly flowing, and although she is a tough cookie to crack, I could see her eyes were glossing over as well. We have a connection, we just get each other that way on a personal level. She hugged me like a long lost sister and said she was sorry that I had to go through all of this. She pulled back and said I really wish I could take this away for you and then reminded me to stay positive, said that no matter what I find out, I will at least know what I am facing and I will have a plan. She said, no matter what, you will not have to face any of this alone. In that moment she was everything I needed. I got a text from the radiologist who diagnosed me. Although I could tell she did not want to alarm me, she was also rearranging her schedule to be at Lemmon Holton in the event that they sent me over for a biopsy of the lump. I was visually a mess but I had support. I wiped my tears, took a few minutes to get my shit together fix my makeup and headed downstairs to Dr. Melniks office.
There was a eerie feeling about my day from the moment walked into Lemmon Holten. I literally walk into that hospital 2-3 times a week for infusions and appointments yet today felt different and reminded me of that very first visit to LH at the same time. Walking into my oncologist’s office only added to the feeling in the pit of my stomach. Within 10 minutes I was being sent directly over to the Breast Center for an ultrasound. A flash-back to the scariest day of my life lie around every corner, right down to the chair I sat in, the inside of the waiting room, and the ultrasound room I was placed in. After getting me in position on the table my technician asked if I could point out the area of the lump, and she reached out to feel it with her own hands. The shakiness in her voice and the tone used as she muttered the the word “ohhhh” confirmed that she felt there was a reason to be concerned. I did everything in that moment to hold it togehter. As she started to wave the wand over my breast I tried to keep positive thoughts running through my mind, however if you have had cancer testing done before especially testing that lead to a cancer diagnosis, you learn to pick up the signs of concern. Quick jolting typing strokes during tests are not routine technician traits, stopping the scan to get out your ruler and measure physical aspects of a questionable area is not routine, and when your technician stops the exam all together midway through to announce that she has to talk to the radiologist and then leaves you on the table for 15 minutes you know things may not be going in your favor. By this time, I was already hearing the words in my head. Your Cancer is back and preparing for the “nightmare to again unfold”.
In that moment my life literally flashed before my eyes. I saw every momentous moment that I was blessed with, and every momentous moment that I would miss if cancer takes me from this world. I saw every person that has touched my life, and blessed me with kindness over the past 2 years, and I saw the faces of my sweet baby girl and my husband. I had my game face on and I was ready to fight again, but I also knew that deep down I didn’t feel as strong this time around because my body has not yet recovered for the last two years of trauma. In fact I was down-right terrified. It’s hard to imagine, but picture enduring a triathlon that you never wanted to compete in, right up to the final moments only to have the finish line taken out of your sights; with all of the cancer struggles of course. My strong exterior is no longer thick as nails, my mind is no longer blindly optimistic, and my body is no longer ready for battle; because despite my positive mindset and driven-to-conquer personality, there are certain aspects of me that have been broken by cancer. No one lives through a battle like this without earning mental and physical battle scars. However as I know all too well, you do not get a choice when it comes to cancer. The next thing I knew, the radiologist was entering the room. She walked in with somewhat of a somber face and walked right up to her computer. The first thing she said was that she knew who I was because of my local involvement with cause-based events and my role in the Cancer Center’s marketing materials and said that Tammy, my now friend and the original radiologist who diagnosed me, had great things to say about me. In my mind I was listening to nothing but my own thoughts….. “Ok here goes. My cancer is back”. My heart was racing, my palms were sweating, and I was so nauseous that my mouth was watering in the way it does right before you start to vomit. After what seemed like an eternity of a pause, I actually got good news. Good news was not what I thought I had coming so I almost froze without a next step in mind. The radiologist said that she did not think the lump was a recurrence, but rather fatty necrosis that has been forming since my surgery in December which is commonly misdiagnosed or scanned as more cancer based on symptoms. She did say we would watch it, then…said but I really needed to get an MRI because that is the only way they could see the chest wall where my cancer was to confirm that my treatments have worked”. All things I have hard a LOT…. over the past few months as I have been fighting my insurance company right along side of my oncologists office since March.…. to get this scan. This first scan since my treatments ended and the expanders (magnets) were taken out…. So THE scan I have literally been thinking about for two years. Since then I have been told by 3 radiologists, and two surgeons that I need to have this scan and that it is insane that Blue Cross is not approving this scan with my history and my track record. We were even told that we should just spend the $3500+ to get the scan ourselves because you cannot put a price on your life. A price we were prepared to add to our list this summer if something my insurance was still fighting me.
This week I turned the corner. Thanks to another (non serious) breast surgery complication, I was finally granted approval on a Breast MRI that will give all of my physicians a good look at my cancer site and where I stand. I just had the very long MRI. While in the tube for nearly and hour there is no way to distract yourself other than thinking about the obvious. Part of me feels guilty for even hoping that my scans are clean when I know so many who have been told the opposite over the past few months and part of me knows that no matter what I am told, the reality of this fear will live inside my mind for as long as I am living. However as negative as that thought can be, it also helps to give me perspective as well and it ultimately helps me to live in the moment. These past few months have been pretty hard on both my husband and I, but what I want everyone to understand is that this terrifying story is living in the minds of post people who have fought cancer even when we are smiling and happy we feel it.
I owe a big thank you to my MRI tech who had just went through a breast scare as well. She very much understood what I was feeling as her mother has also been through it. She brought a lot of comfort and hope into a pretty scary moment. Now comes the hardest part. Waiting to for the MRI to be scheduled for the scan was hard…. But waiting for the results is torture.