Still reeling in shock from the diagnosis, we (my boyfriend, visiting girlfriend and I) started to talk about things that I could control at this point, such as nutritional changes and that we would not have any more details until we met with the doctor on Monday, so try (as difficult as it was) to stay calm until then. Our friend also kept the mood light, and I'm thankful that she was there that day. Looking back, in an odd way, it was a relief to finally know what was going on. The lump was only getting bigger, and now we finally knew what we were dealing with, so we could make our plan of attack to get rid of it.
Now that we knew for sure, I started telling my family and close friends that weekend. The first few calls were the hardest; by the final ones, I was able to say “cancer” without breaking down. When I left a message for a family member to call me because I had news, afterwards, she said quietly, “That’s not the news I was hoping for.” You and me both!
I’m a big fan of lists, and that weekend was all about prep. A family member put me in touch with a breast cancer survivor, and the first thing she said to me on the phone was, “Welcome to the club! The club that no one wants to belong to!” and I nervously laughed. She then told me her story and asked what type of breast cancer I had. Wait, there’s more than one?? I told her my story, and she helped ease my fears and prepared me for what was potentially ahead on Monday. She also reviewed the questions I planned to ask my doctor. She recommended a few books to get ready for my new journey, and I thanked her for her time and knowledge. At the end of the call, which I'll never forget, she said to me, "I know you don't see it now, but cancer is a gift." What the hell was she talking about???! She explained how it made you very focused about your life, to live it more meaningfully and lower your bulls--t tolerance, especially with toxic people. I heard it but didn't understand it; I saw no "gift" in this news.
As my boyfriend and I nervously rode the bus to the doctor for my cancer details, the two things I wanted to hear was that: 1) it was NOT aggressive, and 2) it was NOT in the lymph nodes. On the way, we had a disagreement, and we were frustrated with each other when the doctor came in. (Looking back now, we were both scared s--tless and took it out on each other.) The doctor confirmed that YES, my cancer was aggressive and that it was in the lymph nodes. My heart sank. He then rattled off a bunch of information I did not understand. Through my tears, I took these notes:
- Yes, it was officially breast cancer (meaning it originated in the breast, instead of starting somewhere else in the body and moving there).
- Yes, it was an aggressive form, and cancer was also found in the lymph node biopsy. 😨
- The cancer type was invasive ductal carcinoma (IDC), also sometimes called infiltrating ductal carcinoma (cancer that begins in the milk ducts and breaks out into the nearby breast tissue). It is the most common type of breast cancer and accounts for about 80% of all breast cancers. (During treatment, other cancer survivors always told me I was "lucky," and I was always like, "Gee...thanks?" Later, I realized many had rare cancers without much data or clinical trials available to them. They called me "lucky" since mine was so common, which meant more data was available. They said doctors and researchers seemed to "pay more attention" to the more common cancers.)
- Stage? No idea until we did (even more!) testing.
- My cancer cells were poorly differentiated. (This refers to how the cancer cells look under the microscope. The more the cells look like normal cells, the lower the cancer grade; the less normal they look, the higher the grade. Doctors use grade as one of the factors to determine what kind of treatment you need.) In other words, NO BUENO.
- My "estrogen receptors were negative." Huh? (A survivor pal later explained that this meant the cancer did not feed off the estrogen in my body, which was a "good" thing.)
- What were my options going forward? That would be decided by my new oncologist, which I only hoped would be in my insurance network!
I asked to have a moment in the room, and the doctor left us alone. I couldn’t remember what my boyfriend and I had just been arguing about, and suddenly, it didn’t matter. I looked at him through tears and said, “I know you're pissed, but I’m really scared right now.” We hugged and headed back to the bus, but I couldn’t deal with being in public yet. We stopped to absorb what we had just learned before having to be around other people. Lots of questions swam through my mind...What am I going to do now? How will I go back to work? Will I find a good oncologist? If so, will they be within my insurance network? What will treatment be like? Will I lose my hair? What's the prognosis? Will I even be around for my next birthday? Most importantly, HOW WILL I AFFORD THIS?!
My boyfriend and I are both very private people, and until we knew anything for sure, we had kept my potential diagnosis to ourselves. Once we realized this was not just a bad dream that would be over soon, the reality sank in. After discussing it with many close friends and family, they all suggested this was something we should not face alone, and that night, we agreed to go public with our news. Once my boyfriend began telling people, I could see the weight lifted off of his shoulders. Soon, we heard from several friends who surprisingly had a close friend or family member that had also gone through it. Although it saddened us to hear that it was so common, we could not predict the amazing outpouring of support we would receive or how many friends had been so personally touched by cancer in their lives (whether as a survivor, fighter or supporter).
Cancer is such an a@#hole.