Soon after I was diagnosed with breast cancer, some friends threw me a scarf and hat party. It was something that my husband suggested to them as a way they could help us. I’m grateful that they did this for me – after all I needed those hats and scarves and used them a ton (and I use some of them to this day). Unfortunately, I hated every moment of it. The party felt weird – that’s the only way to put it. It felt forced, like we were all walking on eggshells trying to act as though nothing was amiss. I put on a fake smile as I opened my presents and tried to be grateful for the fact that they were all there for me. But who was I kidding? Every single minute was torture – and I’m guessing most people who attended felt the same way. Who wants a party to “celebrate” cancer?
Well folks, that strange feeling is back. You see, I was diagnosed on January 19, 2012 – which means (quite obviously) that today is my 5-year diagnosis anniversary. I’m officially a 5-year breast cancer survivor. And, as you likely know, 5 years is supposed to be a big deal. Even more important for us triple negative girls – since we initially have a high recurrence rate that goes down drastically over the first 5 years following diagnosis. My odds of the cancer recurring are now the same as everyone else (and the recurrence rate for triple negative survivors doesn’t go up over time like some others do). So I guess I’m supposed to be celebrating.
When I was going through treatment, I was looking forward to this moment immensely. In fact, if you’d asked me back in 2012 what I would be doing for my 5-year anniversary, I would have said that I’d be dancing in the streets and would throw a huge party to mark the moment. But now that it’s here, I don’t want to celebrate at all. Why not? Let me try to explain.
When I was initially diagnosed, I didn’t know whether the cancer had spread. What I did know was that my doctors were acting somewhat freaked out (if you want a recap or you missed the post about the beginning, go here). And when your doctors freak out, you and your family tend to do the same. Hence, I was initially convinced that I was going to die. I’m not saying that I thought I could or might die. Nope – I knew with certainty that I was going to die. That is where my mind was the first 5-6 days post-diagnosis.
But then I started getting some test results back and met with more doctors. I found out that I was “lucky” – my cancer hadn’t spread. I had miraculously caught it early. It truly did seem like a miracle – especially because of how I found my cancer and the fact that my treatment options came together so quickly and easily. Many people noted at the time that they thought I was “meant” to find it when I did. Like I wasn’t yet supposed to die. And I started to believe this too.
I NEVER did self-exams. Seriously, why would I? I had no idea that I had a genetic mutation. There was no family history that I knew about and I was only 38 years old. And because of my age (and lack of family history), I didn’t yet get mammograms. So how did I find my cancer? Well, I was playing a Kinect game with Zachary (my oldest son) and he rammed into me and hit me hard with his elbow – in the exact spot where my cancer was. Had he not rammed me with his sharp elbow, I would not have felt my breast. And since I didn’t do self-exams, I would not have found my cancer when I did (or any time soon thereafter).
As soon as I felt my lump, I called my doctor. She saw me the next day and immediately sent me for a mammogram and sonogram – which resulted in a biopsy shortly thereafter. The biopsy results came back more quickly than they were supposed to (apparently, my cancer was so aggressive that the pathologist called my doctor before she could get a written report out). This all happened very quickly. And then we hit warp speed.
When my doctor called me to give me the bad news, she made it very clear that I needed to hand my work over to others and take time to focus on getting all the necessary tests done and a treatment plan in place. So that is what I did. On the day I got the news, I handed my work off to others, called my clients to give them the news and left my office not knowing when (or if) I would be back.
I began the testing phase the next day (I had numerous tests done over the course of the next week to find out whether my cancer had spread) and quickly began meeting with oncologists. My mom (who used to work as an oncology nurse at MD Anderson) initially tried to slow me down and get me to take some time to consider what I wanted to do and who I wanted to use as my oncologist. Apparently, most people have more time to start treatment than my doctors felt that I did. Of course, my mother changed her tune when she saw the written pathology report.
I was soon presented with an opportunity to get into a Stage II drug trial specific to triple negative breast cancer. Up until then, triple negative breast cancer wasn’t an area in which much research had been done. Most new drugs and research trials had previously been focused on the hormone receptive breast cancers. But, yet again, I was a “lucky” girl. I got into the trial and was chosen to be administered the trial drug (not everyone in the trial receives the drug – it’s the luck of the draw).
I fully believe that drug saved my life. The tumor immediately responded to it. And by the time I had my mastectomy, there were no cancer cells to be found. And that is NOT common. According to my surgical oncologist, she’s only had a handful of triple negative patients who’ve been so fortunate.
As I mentioned above, I initially thought I’d die. But as good news started to trickle in I began to have hope. I went from being in the “why me” mode to believing that I had found my lump just in time – and that it was a miracle that I’d found it the way I did. By the time treatment started, I knew that I would live. It wasn’t my time to die. This mind-set is a HUGE reason I got through that year in relatively good spirits. There had to be a reason that I found my cancer when I did and the way I did. There had to be a reason I got into the trial and received the trial drug. There had to be a reason that the trial drug was so effective for me (it was very effective for some of us, not so much for others). I was convinced that the reason was because it wasn’t my time to die. And that got me through that year. It gave me hope and purpose. It allowed me to keep going when times were rough. I needed to believe it.
And that’s part of my problem now. The “why me” question that I initially had when I was diagnosed with cancer is back. But the question has been turned on its head. Why was I saved and so many others aren’t? Why was the lady that I met on my first day of treatment with three boys (and who was only a few years older than me) dealt a death sentence – but I wasn’t? Why did so many wonderful people that I met during my journey get such a bad hand – when I didn’t? What makes me so special? This is something that I will never completely understand nor be able to explain. And it causes guilt. Experts call it survivor’s guilt.
I know that this feeling isn’t entirely rational. I’m not the one who decides who lives and who dies (or when that happens). I didn’t do anything wrong. Yet the guilt is still there. I know that this is common among survivors. But, to be quite honest, that doesn’t make me feel any better or make the guilt go away. What will? I don’t honestly know for certain. I think talking about it openly will be helpful for starters.
Maybe if I try to live my life as best I can, helping others and trying to do good in the world it will also help. I do believe that each of us is worthy and beautiful. I’ve made that clear before. I suppose I need to take a piece of my own advice. I will continue to work this out and let you know how I fare along the way. If you are a survivor who also suffers from survivor’s guilt, I ask that you speak up as well. It’s not something that is talked about much – but I’d like to change that. For I have a hunch that talking about it will start to make its sufferers feel less ashamed. Maybe it will even help us to eventually let go of the guilt completely. And wouldn’t that be wonderful?
Until next time…