It was just supposed to be a mammogram. A few weeks earlier I had gone to my doctor to inquire about an unusual hardness behind my left nipple. I thought, in part, that I was a tad irrational. My doctor validated my fears during my first appointment and sent me for a scan. I wasn’t crazy. But it was only supposed to be a mammogram.
I arrived at the hospital where the Breast Assessment Clinic is located and I was late because I had never been there before. The woman operating the machine was irritated. I was apologetic but it seemed to fall on deaf ears.
She smashed my breasts between the flat plexiglass that comprised the tortuous experience of having a mammogram, and within only a few seconds her attitude with me completely changed. I was no longer just having a mammogram, I was being sent for an ultrasound as well.
I tried not to cry. I tried to contain my emotion. I felt silly crying. I didn’t have a diagnosis yet. This was all still conjecture, a possibility, a potential reality—this wasn’t something that was confirmed yet. But an ultrasound turned into a biopsy. Within the span of two hours my life completely, and irrevocably changed. It was also my son’s eighteenth birthday. How was I supposed to remain calm and still celebrate my son’s milestone birthday with a looming dark cloud hanging over my head and my life?
It only took four days for the results to come back. Four days is nothing. Four days is insignificant in the context of a lifetime. But these four days felt like forever.
It was confirmed on a Monday. I had been diagnosed with Inflammatory Breast Cancer.
I remember sitting in the grey examination room of my doctor’s office while medical professionals conveyed the gravity of my diagnosis. My whole body shook with raw nerve. I was completely undone.
In the four days between biopsy and diagnosis I tried in vain to stay off the internet. I “Googled” survivor stories. Did you know there are none? There are statistics. A LOT of statistics. They are grim.
But I had found a blog by a woman from 2009. She was faith filled, positive and so determined that she was going to survive. In the early days she posted a lot about her treatment, her recovery and her hopes for the future. She was honest about her struggles and about her fears, which was hard to read but I appreciated her honesty. I loved her declaration that she was going to beat this, she was going to defy the odds and survive. It was empowering to read about her defiance of this disease. But then I read the last post. It was by a family friend. They informed the readers that she had lost her battle, and she was dead.
I threw my tablet half way across the room. I cried. No, I sobbed. I sobbed an angry, bitter, sorrowful cry that echoed through my home. This was just the beginning.
I have since survived 8 rounds of chemo therapy, a left radical mastectomy, 25 rounds of radiation, and I am now in recovery. I, like the woman I wrote about above, am optimistic, defiant and determined that I will beat this disease. When they removed the breast tissue from my body, they reported that I had no evidence of the cancer in my body. They have told me that is the best possible outcome they could have hoped for. That gives me hope.
But if you are reading this after I am gone, I don’t want you to despair. This disease is aggressive, but there are aggressive oncologists who are tirelessly researching new and improved methods for fighting this disease. This disease will knock you down and cause you to feel all kinds of emotions ranging from despair to anger, but when you encounter a new victory it will give you renewed strength and hope to continue to the next phase.
And there are others. There are others all over the world who are living with this diagnosis. Some have passed away. But others are bravely facing each day and surviving. Some have two years, five years, seven years, twenty-eight years—they are surviving. It is possible. Do not lose yourself to despair.
I won’t sugar coat this: IBC sucks. There are seemingly no good reports online, NOW. But hopefully, in the future, YOU will be that good report. Hopefully because woman like me have gone before you and endured the pain and the tragedy, oncologists will have more data to compile that will provide answers for women like you. And I hope beyond hope that because of other women who have died before me, that because of their sacrifice I too can survive, and this article is obsolete. I hope that I can continue to provide anniversary updates that announce that I am still alive. I hope beyond hope that 20 years later I can say, you have hope because I am still here.
But if I am not, I will tell you this: I fought and endured so that you could have answers and so that you WILL survive.
**If you have found your way here because you have just been diagnosed with Inflammatory Breast Cancer, then I encourage you to reach out to the IBC Network Foundation, it is important that you find others who have gone through what you are about to go through. There is an entire network of support. They will help guide you.