I received my cancer diagnosis over the phone the afternoon of June 9, 2015.
I had been waiting five long days to hear the results from the biopsy and it seemed that each day that passed reaffirmed my fear that no news was bad news.
I remember I had a pen and pad of paper sitting ready on my nightstand and I struggled to scrawl down the information the pathologist provided on the other end of the phone pinched between my ear and shoulder.
“In-va-sive duct-al car-cin-o-ma, grade three,” he repeated more slowly. I had never heard it before and had so many questions. After additional information that I didn’t understand, he said that a nurse navigator would be contacting me later that day for the next steps, then told me to have a nice day and hung up.
Have a nice day? Did he really just say that? How do you have a nice day after finding out you have cancer?
I immediately called Nate, who was at work and came straight home. We didn’t say anything. We just laid in bed and he held me while I cried until I was finally able to speak.
“I’m scared.” Somehow stating the obvious out loud took some pressure off my shoulders.
I couldn’t tell my sisters without crying so I texted them. They had known that I had had the biopsy, but I really think they both thought it would be fine, both previously having had their own scares that ended up being nothing. My parents, however, did not know anything about it. I didn’t want to worry them if it ended up being nothing, so I hadn’t told them any of. I could not bring myself to tell them. The words just wouldn’t come, only tears. My sister drove home to deliver the news.
Hours later, I finally heard back from a nurse navigator who was sweet and sympathetic and had scheduled me to see a medical oncologist the next day.
Nate and I sat in the examination room with him and the nurse navigator and attempted to keep up with all of the new jargon that came out of their mouths without definition or explanation.
I was told I was hormone receptor positive and HER2 positive, or triple positive, which didn’t sound positive. I thought it meant my cancer was three times worse. I confused my grade 3 cancer with stage three cancer. I was told I’d have to have chemotherapy and I immediately lost it. My doctor who had referred me to get the ultrasound and the pathologist who had given me my diagnosis both said radiation would likely be the recommended treatment. I hadn’t prepared myself for chemo. After seeing my aunt Karen go through it, all I knew of it was sickness and hair loss. I definitely didn’t want to do chemo.
After being told that this was a treatable cancer, my number one question was how the treatment would affect fertility.
“Chemo can definitely make a person infertile and you will need to be on tamoxifen for up to seven years and you cannot get pregnant on that. But we can talk about that later.” Cue the continued crying. Nate had to ask the doctor to hand us the box of tissues that was stashed in a bin on the wall next to him. He set it on his desk next to me then sat staring at the carpet, waiting for me to finish crying before he went on to more treatment information that I don’t remember hearing.
The next day I met with a surgeon who told me if I tested positive for the BRCA gene, I would need a double mastectomy along with the removal of my ovaries. If I did not have the gene, he suggested a lumpectomy, stressing that my odds of survival would did not increase with a mastectomy. While not what he meant, all I heard when he said this was that either way, I was going to die.
After two days of appointments, papers, scans, pamphlets, and endless phone calls with the cancer center and insurance company, I was exhausted and still in shock. All of this was too much to process so quickly. I didn’t understand any of it.
The next few days were a struggle. I tried to go about daily tasks like grocery shopping and found myself pushing around an empty cart, looking at every other customer in the store thinking, she doesn’t have cancer, he doesn’t have cancer, becoming angry at them for flaunting their stupid cancer free body parts in front of me. I left the cart and walked out to my car as fast as I could, where I could fall apart.
Since cancer was all I could think about, I decided to read everything I could online and in the books and pamphlets the nurses and doctors gave me. Sites like breastcancer.org, cancer.org, and blogs like thesilverpen.com soon became bookmarked staples that I’d read at night when I couldn’t sleep. They equipped me with the vocabulary and built the framework to understand what I was about to encounter, which alleviated some of the fear for me.
I know some patients cope using the philosophy that ignorance is bliss, because they find it less helpful to know what’s going on or what could happen. For me, I needed to know. I tackled everything like a new subject I was studying. If I could understand it, I could explain it when people asked,which somehow helped me. It also made me feel more prepared for what was to come. It made the things that at first sounded foreign and frightening a little more familiar and I could see that this was the standard treatment backed by decades of research that had worked for many others before me.
The initial blow, even if it’s almost anticipated, like in my case, is the worst part the diagnosis. Everything appears, feels, and sounds different than it did before. Everything makes you question if you’ll live to see this day or that day. Everything is terrifying. But eventually, you suit up and you collect yourself for what you know you have to do. Then before you know it, one day you look back at how much you’ve learned since those early days of diagnosis and how strong you’ve become even when you got weaker and how you found a way to get through it all. You definitely did not do it alone, but the fact that you adjusted and got through it is truly so astounding that sometimes even you ask yourself if it really happened.
To any newcomers to the world of cancer, I am sorry that you are now a part of this world, but please know that it gets easier, and that you will still have good days despite the bad ones, and that often times and in many ways, the diagnosis is the hardest part.
Tiffany’s top tips for dealing with the diagnosis:
Using an accordion binder, like this one that I received when first diagnoses, can help organize, keeping all of the information in one place where you can easily store and find it.
Make sure someone comes with you to all of your initial appointments for support and to help record all of the information so you can go over it all later.
Use an accordion binder to organize all of the papers, pamphlets, bills, notes, etc. to that you will leave with at each appointment.
Call your insurance company and find out all you can about what they will and will not cover for your proposed treatment, and if need be, get feisty.
Keep a running list of questions on your phone or in a notebook that you can bring to your appointments, then jot down your doctor’s answers.
Cry if you need to.Then cry again if you need to.
Start a Pinterest board to keep any and all resources that look like they might be helpful in one spot so you can easily pull them up and browse when you can’t sleep in the middle of the night.
Keep yourself distracted with things that make you happy.
Ask a few friends and family members to let the rest of your friends and family know so you don’t have to talk about it over and over.
Allow yourself to get angry. It is okay to be angry.
Know that soon you will adjust to this strange new life.