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The Whole Story (part I)

Like all good stories, we should start at the beginning. I had recently left a bad relationship, moved to Omaha, joined a volleyball team, and was slowly finding my way back to being me when I discovered an area in my breast that was harder than the rest. Not a 'lump' just 'this side is harder than that side', and this not being the first time this had happened in my life- I didn't think a whole lot about it. This was in either July or August of 2018. In November, I was visiting my sister and had a dream that she was mad at me because this hard spot was a 'thing' and more of a 'thing' than it would have been if I had only had it checked when I first found it. So naturally, as one does, I decided to get it checked just to prove the 'sister in my dream' wrong (mind you, at this time, I've told no one about the weird hardness in my breast). The doctor felt it, didn't think much of it but thought getting a baseline image wouldn't hurt. So we do that, a mammogram and an ultrasound just to get the lay of the land established. Now, I'm not sure if you have ever had an ultrasound done, but they take images of all sorts of things they can interpret and you can't. Sometimes, they flip a switch and you can even see red and blue flash on the screen. So, I'm not super worried when the tech is taking pictures. Then the radiologist comes in, looks at the images, and says something like 'See this area here? It is so dense, and I can't tell what is going on in there. It's probably some scar tissue from an old wound or a time when you were hit but for safety's sake, let's get a biopsy to make sure." That was unpleasant. It was like being punched in the boob, hard. It was sore for days and I spent so much time thinking 'I bet its from all those times I didn't move my feet and took a volleyball off the chest, or when I slid into a base headfirst (which was dumb because it never worked, every time I did that I was out).' That was November 19th. On November 28th I get a voicemail on my phone at work from my doctor asking me to call her back. My voicemail on my cell phone was so full that she couldn't leave me a message there and had to call me at work (whoops!). So I called her back, while at work, standing next to a coworker. This is where it gets weird for me, she just simply says 'I've been trying to get ahold of you. It turns out we were both wrong. The results came back as cancer.'

Now is where it is probably important to tell you that I am a science nerd. I have studied molecular biology, mainly cancer biology for years at this point. I find it fascinating how cells can divide so often and become exactly what they are supposed to be, and that this happens hundreds of thousands of times to each of us. This process screws up all the time, but there are checks in place that fix them. Until the error occurs in the blueprints for the checks- then there is no fix and nothing to keep the cell under control. And now you can imagine how annoying I must be for the doctors! I know just enough to ask questions, to find research papers to show them, and I'm stubborn enough to make them explain details and decisions so that I understand why. Bless them for their patience. Also, feel free to do these things yourself. It is SO important that you understand why they are making the decisions they are making. Because as my favorite Albert Einstein quote goes 'If you can't explain it simply, you don't know it well enough.' So those doctors, they know why they are making those choices, and if they have to get out the colored pencils to draw you the 'why' behind their decision, make them!! Be a part of your team!!

The first step was fertility preservation. I found a facility here in Omaha, with an amazing doctor who did everything she could to help me, including getting me signed up for LiveStrong's fertility preservation grant, which paid for the medications I needed. She was no-nonsense and I appreciated that. It was while I was sitting in the waiting room for the appointment before the appointment where they would perform the extraction of my eggs, that I got a phone call from the hospital. I answered and it was my oncologist's nurse, asking me if I could come in that afternoon to talk about something we saw on the scans. This knocked me on my a$$. It took me right back to the talk I attended at a hospital I worked at in 2012 where a doctor stood at the front of a large room and said "We all know that once the cancer has spread the patient will either die of it or with it.' (Flashbacks are sometimes horrible things). So there I am, in the waiting room of a fertility clinic all by myself, with tears leaking from my eyes, no matter how hard I wished for them away, while I called my mom (cuz moms fix everything right?!?). I told her the news and asked if she wanted to come with me. Mind you, my parents live around 3 hours away and are at work by 5:30am every morning and it is around roughly 7:45 in the morning. They dropped everything and came rushing out to be with me as the doctor showed me the three tumors they found in my liver. The two large ones were seated on the outside, right against each other and my ribs, measuring over 4 cm. The one small one was this perfect little ball of 1.5cm. We had to do a biopsy to see if these were metastasis or if they were brand new, but equally unlucky different type of cancer. I think subconsciously I didn't want to find out. The day of the biopsy, as they wheeled my bed back into the surgical suite in Interventional Radiology, the nurse left my bed at the door as she stepped into the sterile room to adjust something, and my bed starts slowly rolling down the hall. I probably could have got away, but I jokingly said 'I'm making a break for it!" and she caught me. Also, oddly enough one of the people performing my biopsy was named Kevin. I bet that was a weird day for him.

On Christmas Eve 2018, they harvested 15 eggs that I will never get to use, because the day after Christmas they called to tell me that the masses in my liver are indeed breast cancer metastases.

I aptly named these masses Kevin's wives and kid because Kevin is a jerk, so he probably kicked them out early on and they found this great place to land, far away from him in my liver. Finding Kevin's family kind of ruined the initial treatment plan. The list of dates I had for things like, port placement and chemo, all went out the window. I was now classified as incurable and they best they could do was to try some drugs to see if we could slow it down. Cross our fingers that it would shrink the tumors, and pray that someone would develop a new drug that would attack the cancer cells when this drug, or the next, or the one after that, stopped working, because eventually they will all stop working. This is where my idea of how a cancer journey should go got blown apart. Hopefully, you've read the post about getting a ticket for a bus that has already left the station, because I don't really want to dwell on having to beg my doctor for a chance to fight, or about how when I was given that chance he literally said "I was out-voted. They think there is a chance for a curative approach to work." I'm pretty sure there is a translational mishap at work here, because he is the nicest guy, but hearing that your doctor didn't believe in your chances, kind of sucks. I will be forever grateful to the other doctor's that sit on and participate in the tumor board for giving me the chance to fight, for formulating the plan that got me to no evidence of disease (NED), and for out-voting my oncologist. Thank God for their big, beautiful brains.

Go get a cool drink. I think we both need one after that....

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