Amy’s Story – 13 year survivor

Today is a BIG Day for me, February 6th. I have been a survivor now for 13 years.

Yes! On this day I woke up with my right breast swollen, and I mean very swollen, no lumps or bumps, just much bigger. My first stop was to call a nurse friend to “Feel Me Up” and she looked at a few things and said, “I highly recommend you see your doctor.  Please call them on Monday, do not wait”. Well, I went to an Urgent Care and they told me they were setting appointments for me to see a breast doctor and get a mammogram that week. Well, I was like “OK whatever, I guess that will be another month”, but they worked their magic and I had an appointment for a mammogram in a few days, and an appointment with a breast doctor a few days later. A biopsy was done and the following week I was told I had breast cancer and that I needed to see an oncologist ASAP.

After going through all the fun test and seeing all the great medical staff at Virginia Oncology, I was told by my oncologist, “You have Stage Three Triple Negative Inflammatory Breast Cancer and we need to jump on this asap”.

WOW!!  I didn’t know there were various kinds of breast cancer and here I was with two of them. They explained what it meant, and it was all just floating around above my head. I was not getting any of it. But we started, and Dr Michael Danso, my oncologist, said that he had this plan but was ready to put me in a trial if needed.

I had my port placed in March.  I remember hearing the surgeon, who was on the phone with Dr Danso, saying something like “Well even if it goes to stage 4, she is still going to need it?”   I freaked out “What do you mean stage 4? Am I stage 4?”  The Doctor looked around the corner and saw I was right there and got off the phone and talked to me explaining (again because I missed so much the first time) how aggressive this was and they were being aggressive also.  I calmed down (well sort of). Then we started aggressive chemotherapy.  I received treatment every other week from March till July.  In August, I had a double mastectomy and started radiation in November.

That is the medical part of my Cancer Survivorship now let me explain my Life Survivorship! On the 6th of February 2010 I became a Survivor of so much more and so did my family. I was at such a loss as to what was going on, the things the doctors were saying, trying to understand and remember everything was just beyond me. I remember being in the shower one night and just bawling like in the movies, on the floor arms wrapped around my legs crying. Thank goodness no one was home, I would have scared them even more. I stopped and thought for a few minutes and started to tell myself, “I can do this, I am going to do this, I am doing this, I have done this.” That became my mantra whenever I was feeling like giving up, I would repeat it over and over till I was feeling better. Then going through chemotherapy, my husband was there at every appointment. He would sit there and be on his phone of iPad watching “The Three Stooges.” I swear that man 😊. He would take me home and just wait for the sickness to set in, knowing I would be rushing to the bathroom.  I could not eat for a few days after treatment, but he tried so hard to get me to eat something. 

I remember when we told my son, who was just turning twelve years old.  He kind of seemed to get some of it and his first question was “Are you going to lose your hair” and then started laughing.  I knew that I had to stay stronger than him and that was going to be hard. He would go out and play but every so often I would hear him come in and tippy toe to my bedside to make sure I was breathing and doing ok. Gosh, I put him through that and felt horrible. I had my mastectomy on Friday the 13^th. OMG, is that a sign or what is it? I got through it because it meant I was closer to the end, closer to being a normal woman with no breasts, to being a wife who had no breasts. I was on my way. Then I started radiation.  It was a breeze to lay down, stretch my arm over my head, do not move. Heck, I got that lol. Then the burns started and the skin was burning and bubbling. I could not put my arm down anymore cause it hurt, yes, I used the silvervine, but man that did make it better. When I finished all the treatments, I rang that bell so hard I thought I would break it. So glad because that meant I was even closer to wellness, but wait a second, my hand started to swell and ache, WTH? I ended up with Lymphedema. My right arm stays swollen and gets cellulitis often enough that I have to go to hospital a few times a year for IV antibiotics. Yup, I joke with my teammates “Don’t mess with me, I will give you the fat elbow and you don’t want that trust me!” and we have a laugh.

I was done for a few months, and I am starting to kind of feel better, not getting sick anymore, no more burning, keeping the arm under control. I got this. Then I decided to have reconstruction.  I opted for a DIEP, where they take my lower belly and create the new breast mounds.  I call them my “Belly Boobs”. That was not too bad, I mean I could not look at myself for about two weeks then I was like, “Oh that is all?”  I know it’s crazy to think that, but I was feeling like I am doing better, I am getting better.

As time went on my family began to see me, see me improve, starting to smile again, to do things again. I found a local support group “Here for The Girls” who taught me that this was not the end…. that I am still here and doing things. Yes, I was and could still get up every morning.  There were not too many ladies who had Triple Negative Inflammatory, so I looked online on Facebook for more like me.