One of the most common questions I get asked is this: What kind of symptoms were you having before you were diagnosed with Breast Cancer? I know why I get asked this question so much. It's because women are scared. They want to know if there is anything they can do to prevent what has happened to me from happening to them. I dread this question really, because in truth there is nothing that could have prevented or kept me from becoming one of the many who are diagnosed stage IV at initial diagnosis. But, here is my road to Cancer, and to the best of my ability I will describe my symptoms in the hopes that it might help someone else.
In simplest terms, the symptoms and causes of my Breast Cancer having reached stage IV right under my nose were: Stress, decline in health that I attributed to all of the wrong things, Grief, Depression and Anxiety. But, the most important cause was ignorance. I thought that I knew all I needed to know about Breast Cancer but, I really had no idea it was such a sneaky and complicated disease. I thought mammograms were enough. But, they aren't.
Let's start with stress. If I had to describe my life in the last two years with one word it would be stress, stress and more stress. I am a mother of four, there is always something going on. And, just because my kids are mostly grown, that doesn't change the fact that we as mothers worry all of the time about them. And, there was just a lot of life STUFF happening with them. Ordinary stuff... but, just a lot going on in general. In addition to every day stress, my mother was diagnosed with lung cancer and then pancreatic cancer, which eventually led to her death in August 2014. My stress, grief, anxiety and depression were completely off the charts. So, yes... I didn't feel good, I wasn't sleeping and I had a horrible case of plantar fasciitis that kept me from being as active as I used to be. I was also experiencing back pain, hip pain and arm pain but thought it was just from being inactive and from gaining a little weight from lack of exercise.
After a long grueling summer of near complete physical and mental exhaustion taking care of my mother before she passed, I found that I was just not bouncing back during the months after. Physically I was struggling, my anxiety was worse than it's ever been, I felt like I had aged 20 years and I just didn't feel good. I was struggling with walking long distances but I attributed it to my ailing foot. But, now... thinking back... it was Cancer that was the primary cause of all of these things. It never occurred to me to even consider that I might have Breast Cancer. My mammogram that I had in May 2014 was clear. They even did an ultrasound during that visit to double check one spot that they thought was suspicious but it turned out to be nothing, or so they thought.
What none of us knew at the time, even the doctors, was that I did have a tumor. They just couldn't see it at the time because it was hiding underneath dense breast tissue. A slow moving cancer called Infiltrative Lobular Carcinoma that quite often goes completely undetected by mammograms. When it starts to spread it spreads in strings as it moves up into the breasts. This is why I didn't feel the tumor or the lump. When I did my self checks I couldn't feel the tumor that was deep in the breast tissue. The strings of cancer that were forming through the breast didn't feel like lumps so it was allowed to sneak by without notice. It wasn't until the entire left side of my left breast began to feel firm that I noticed anything was going on at all. It felt like a clogged gland. Something I had experienced when I was breast feeding many years ago.
I very promptly made an appointment to have my breast checked... almost exactly one year from my last mammogram. Initially no one seemed to be concerned and the mammogram didn't really see anything specific. They could see that something was going on but could not be sure. I then moved to yet another ultrasound. Because of my dense breast tissue, they were able to see a part of something that thought looked like a cyst but still weren't sure what it could be. My lymph nodes underneath my left armpit were lit up like a Christmas tree. I knew in my heart at that moment that something was really wrong. But, I kept hoping it was just an infection.
My next stop was biopsy.
On the day of my biopsy my anxiety and fear were high, but I was trying to stay positive and not think the worst. I had a wonderful Dr. that took her time and was very professional. I was lying on the table answering all of their questions to help keep me relaxed because yes, I was tense and scared. And then I asked the Dr... "Do you think I'll still be able to go on our vacation to Florida next week?" She just promptly said... "This is highly suspicious of Cancer, you need to cancel those plans."
At that point and time I think I went into shock. I remember nodding my head and speaking with her in this calm voice, but on the inside I was slowly falling apart. And, yes... after I walked away that day I was just absolutely devastated.
After the results came back as positive for cancer, my next stop was for a breast MRI which finally showed the tumor in all it's ugly glory and it's trail of destruction through my breast and into my lymph nodes.
My next stop was to the breast cancer team at the breast cancer care center. At my first appointment the doctors were in a hurry... everything started happening really, really fast. I met with surgeons, the radiologist, and the oncologist. They were talking about mastectomies, chemo, radiation, re-construction and my mind was a blurr. But, through it all I was still hopeful. Because in my mind breast cancer was something you could beat. And, I was going to beat it, no matter what I had to endure.
After I met with all of the doctors, they had a meeting afterward to finalize their plans. One of the items on the agenda was a full body PET scan. The oncologist was concerned about the unusual pain I was having in my back, hip and arm. They wanted to make sure the cancer had not spread. I was still very hopeful at this point and trying not to worry.
A couple of days later I got the call... the call that would change my life forever... the cancer had spread to my bones and I was stage IV... there is no cure. We scheduled a bone biopsy to confirm that it was the same cancer. Yes, it was...
The weeks after this phone call were the hardest weeks of my life. I was inconsolable, I was heartbroken, I was scared... and, the only thing I could think about was death. I was also in a deep state of grief. I think it was the first time in my life that I had completely lost hope. I became very, very angry. I was looking for someone to blame. At first I blamed the Doctors. After I learned more about my type of cancer I realized they were not to blame. Then I blamed myself. But, after a few discussions with my oncologist and several sessions with the staff cancer therapist I realized I couldn't blame myself either. I had done nothing wrong. But, I was still angry... so, I next directed my anger at the big guy upstairs. Yes, I refused to talk to God. I felt singled out and betrayed. I couldn't understand why he allowed this to happen. What purpose could it possibly serve to put my family through this? I'm still working on these questions to some degree. Learning to accept what cannot be changed has helped and I am realizing now that I can't really blame God either. Sometimes, our bodies just stop working the way we want and I'm learning that God isn't as particularly concerned with the state of our bodies as he is the state of our souls. So, instead of working on trying to fix my body, which can't be fixed, I will work on continuing to nurture my spirit instead. I'm realizing that is the most important part of ourselves... our state of mind and our attitude. A strong spirit can most definitely take you further in life, even if your body is broken. I still have a lot to give, I just have to learn to do it differently than before.
So, here is what I want all of you to know about Breast Cancer... It's no ones fault! Sometimes cancer just happens. Society has taught us that if we do the right things and avoid all of the wrong things that it won't happen to us... but it can and it will, if it wants too.
I always got my mammograms and pap smears, I'm not an excessive drinker, I don't smoke, I never took birth control pills, I exercised regularly, I breast fed, I avoided aspartame, I drank lots of water... heck... I even wore sun screen every day so I wouldn't get skin cancer. I was very vigilant and it still happened to me anyway.
So, the very short answer to the very big questions is this... YOU are the best advocate for your own health. If you are experiencing an unusual drop in your energy, if you are experiencing any pain at all in unusual places and you can't figure out why, if you are just in general feeling... not yourself... do not hesitate to go to the doctor and don't feel foolish for asking for a scan if you can't seem to get to the bottom of why you are having these symptoms. Breast Cancer symptoms do not always reside in the breast... for me it was everywhere except in the breast. The breast was the last place I felt anything at all.
Someone asked me if I thought that getting mammograms was a waste of time. The answer to this question is no, they are not! My cancer is rare and only represents a small number of patients. Many women who have other types of breast cancer are able to catch it early through the use of mammograms. But, I do need you to understand that they are not always accurate. So, you still need to be vigilant about continuing your self checks and monitoring your overall health just in case.
One of the many things I have learned so far on this journey is that I am not in control. Thinking that you can control what happens to you is a myth. Positive attitudes and good living does not guarantee anything... you can do all the right things and bad things will still happen.
Despite the fact that something bad has happened to me, I feel that it is extremely important to move away from playing the blame game. The past cannot be changed, and even if I got all the answers to the why and the how, it still will not change my diagnosis. So, from this point forward, I will battle my cancer, live my life and try to make each and every day count.
It is my hope that one day we will find a cure for this awful disease that takes away so many people in our lives way too early. But, until that day comes... we must live each day as if it was our last. Because... and, I love this quote... None of us are getting out of this life alive anyways... we get one go at it and that's it. So, I'm going to make sure my life is a good one and I hope all of you will do the same.